Social and health care needs in patients with hereditary fructose intolerance in Spain | Endocrinología, Diabetes y Nutrición (English ed.)

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In these patients, nausea, vomiting, perspiration, lethargy, shock, dehydration, hepatorenal impairment and/or postprandial hypoglycemia rapidly occur when large amounts of fructose are consumed (4–6g/kg/day). This situation may lead to coma and even death, and can cause irreversible neurological, hepatic and renal sequelae. However, the ongoing consumption of small amounts of fructose (due to dietary transgressions or lack of a diagnosis) equivalent to over 40mg of fructose/kg/day can also give rise to feeding difficulties, vomiting, hepatomegaly, edema, ascites and lack of weight gain (in children). The metabolic and/or laboratory changes are mainly due to the accumulation of the substrate of aldolase B, fructose-1-phosphate, causing the inhibition of liver glycogenolysis, the inhibition of gluconeogenesis, the inhibition of phosphomannose isomerase, partial fructokinase inhibition, liver alterations, renal tubular damage or the depletion of ATP or inorganic phosphorus, with hypophosphatemia, hypermagnesemia and increased magnesium loss in urine, hyperuricemia, uricosuria, metabolic acidosis, etc.<a class="elsevierStyleCrossRef" href="#bib0140">1</a><elsevierMultimedia ident="fig0005"></elsevierMultimedia>After a dietary restriction of all fructose sources, recovery and the disappearance of signs and symptoms occur rapidly, with an excellent long-term prognosis, though some patients maintain liver steatosis, with normalization of the liver enzymes, for years. The only currently available management is a lowering in the diet of all fructose sources to <1–2g of fructose/day in adults and <20–40mg/kg/day in children.<a class="elsevierStyleCrossRef" href="#bib0140">1</a> Fructose is naturally found in fruits and vegetables, saccharose (disaccharide of fructose and glucose) and honey. Other sweeteners to be avoided are tagatose (a fructose isomer metabolized by aldolase B) and sorbitol (as well as sweeteners containing it, such as maltitol, lactitol or isomaltitol), which is converted into fructose by the enzyme sorbitol dehydrogenase.<a class="elsevierStyleCrossRef" href="#bib0145">2</a>Understanding the sociosanitary needs of patients with low-prevalence or rare diseases (RDs) is a starting point for identifying and measuring the impact and burden of these disorders on the affected individuals and their families, and social and health institutions. Spanish national studies such as the ENSERio trial of the Spanish Federation of Rare Diseases (Federación Española de Enfermedades Raras [FEDER])<a class="elsevierStyleCrossRefs" href="#bib0150">3,4</a> reflect public awareness of the importance and sociosanitary repercussions of these diseases upon clinicians, investigators and politicians.<a class="elsevierStyleCrossRef" href="#bib0160">5</a> To date, no studies have been published on the sociosanitary needs of patients with HFI. The present study was designed to analyze such needs in people with this disease in Spain.Material and methodsA prospective observational study was carried out involving the distribution of an anonymous survey assessing the social and health needs among patients with HFI residing in Spain (June 2016–February 2017). The survey design was based on the questionnaire of the “Study on the sociosanitary needs of people with rare diseases in Spain: the ENSERio Study (FEDER)”, conducted on a sample of 715 individuals with RDs and their families (November 2008–January 2009).<a class="elsevierStyleCrossRef" href="#bib0150">3</a> The questions were adapted to our population, respecting the structure and semantics in order to preserve their validity, with the addition of further questions regarding improvements to the current situation, the use of medicines, information sources and health-related quality of life (HRQoL) surveys (EQ-5D-Y and EQ-5D). The final survey consisted of 40 questions addressing sociodemographic aspects, diagnosis, the degree of disability, healthcare, disease-related expenses, patient associations and disease perception (<a class="elsevierStyleCrossRef" href="#sec0040">Annex I, Supplementary material</a>). The study was approved by the Ethics Committee of Hospital Universitario Central de Asturias (Spain).Non-probabilistic sampling was performed in an attempt to reach as many HFI patients in Spain as possible. The questionnaire was distributed through the Association of Patients with Hereditary Intolerance to Fructose (Asociación de Afectados por Intolerancia Hereditaria a la Fructosa [AAIHF]) via e-mail (<a href="mailto:asociacionihf@gmail.com">asociacionihf@gmail.com</a>), website (<a href="http://www.aaihf.com/">http://www.aaihf.com/</a>) and social networks (Facebook® and Twitter®), as well as through other associations of patients and physicians specializing in metabolic diseases.Patients living in Spain with HFI diagnosed by genetic testing, liver biopsy, intestinal biopsy or fructose overload were included in the study. Patients in the process of establishing the prognosis but with a clear suspicion of HFI based on the clinical symptoms were also included, while patients with a diagnosis other than HFI (e.g., other congenital metabolic errors or congenital or acquired fructose malabsorption) and individuals with doubts about their diagnosis were excluded from the data analysis of the study.Qualitative variables were reported as absolute numbers and percentages, while quantitative variables were presented as the mean and standard deviation (SD) and/or the median (Md) and interquartile range (IQR) in the event of an asymmetrical distribution. The chi-squared test or Fisher's exact test was used to compare qualitative variables, while the Student t-test or nonparametric tests (in the event of a non-normal distribution) were used in application to quantitative variables. Statistical significance was considered for p<0.05. Correlations between two variables were explored using Pearso's R statistic, Spearman's rho (ρ) or Kendall's tau (τ) statistic. The SPSS version 20.0 statistical package was used throughout.ResultsA total of 72 surveys were completed. Practically incomplete or duplicate cases were excluded, together with those corresponding to patients residing outside Spain or with a diagnosis other than HFI. Fifty questionnaires were accepted, mostly corresponding to females (n=34/49; 69.39%), subjects over 16 years of age who answered the questionnaires by their own means (n=26/50; 52%), with a mean age of 22.92 (15.04) years [Md=23; IQR=27], and of Spanish citizenship (n=49/50; 98%). In the case of patients under 16 years of age (n=24/50; 48%), a relative was asked to answer the questionnaire. The respondents came from 11 Autonomous Communities, mainly Galicia (n=10/50; 20%), Andalusia (n=7/50; 14%), the Community of Madrid (n=7/50; 14%) and the Basque Country (n=6/50; 12%). Forty-two percent (n=21/50) reported that some other member of their family also had HFI, mainly siblings (n=18/21; 85.71%).Most reported having had a diagnosis (confirmed [n=40/50; 80%] or not yet confirmed [n=6/50; 12%]). All the underage patients had a diagnosis, mainly based on genetic tests (second in order of frequency among adults [p<0.001], after fructose overload). Symptoms started in infancy after intake of the first fruit. In most cases the first symptoms manifested before three years of age (67.39%), though a positive correlation was observed between age and a later diagnosis (τ=0.365 and p=0.001), since most children had their symptoms earlier (before one year in 58.33% of the cases) than the adults (<a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>). The respondents considered that the consequences of diagnostic delay or the lack of a diagnosis were mainly “receiving no support or treatment” (n=15/34; 44.12%) and worsening of the disease (n=13/34; 38.23%), though 29.41% (n=10/34) reported no consequences due to such delay or were not aware of any consequences. Most suffered no sequelae (n=34/47; 72.34%) and had no disability status or had not requested official disability status (n=32/50; 64%).<elsevierMultimedia ident="tbl0005"></elsevierMultimedia>Forty-four percent of those surveyed reported receiving the treatment they need for the disease (n=22/50), though almost one-quarter required no treatment (n=12/50; 24%). Care was provided mainly by specialized physicians in the public healthcare setting (n=27/32; 84.37%), followed to a much lesser degree by private specialists (n=8/32; 25%) or public primary care (PC) physicians (n=7/32; 21.87%). Management mainly consisted of continuous long-term or permanent treatments (n=22/28; 78.57%). Most reported taking some kind of medication (n=31/45; 68.89%; mean per patient 2.06 [0.85]; Md=2, IQR=2), with greater medication in children (n=20/24; 83.33%) than in adults (n=11/21; 52.38%) (p<0.05). The most commonly used medications were multivitamins, vitamin C, glucose, and/or folic acid (<a class="elsevierStyleCrossRef" href="#fig0010">Fig. 2</a>). Most subjects had no difficulties in relation to access (n=25/31; 80.64%), though concerns were expressed regarding the non-financing of treatment and difficulties and/or delays in inspection visas. In turn, 31.11% (n=14/45) reported that they did not take any medication, and none of the respondents used medical devices for HFI.<elsevierMultimedia ident="fig0010"></elsevierMultimedia>Most of the patients had visited a clinic due to HFI in the previous two years (n=40/50; 80%), mainly metabolic disease units (n=17/40; 42.5%), dieticians or nutritionists (n=17/40; 42.5%), endocrinology (n=15/40; 37.5%), hepatology (n=13/40; 32.5%), gastroenterology (n=12/40; 30%), allergology (n=11/40; 27.5%), genetics (n=10/40; 25%) or general pediatric consultations (n=10/40; 25%). The patients that did not visit such clinics or who failed to answer were all adults. Less than half (n=18/40; 45%) were seen in public reference centers, with most visits being by children (n=14/24; 58.33%), since only one fourth of the adults visiting clinics were seen in these units (p<0.05). Most of the affected patients had not been hospitalized in the past two years because of HFI (n=40/50; 80%), and had not needed to travel outside their province (n=34/50; 68%). Eighty-four percent reported having undergone medical tests in the previous two years, particularly biological or biochemical tests (n=39/42; 92.86%), ultrasound (n=34/42; 80.95%) and, to a lesser extent, other imaging tests (n=12/42; 28.57%).Overall, less than half of the respondents (n=24/50; 48%) were satisfied with the healthcare received (62.5% in children under 16 years of age, n=15/24 versus 34.61% in adults, n=9/26 [p>0.05]), and most reported a lack of knowledge of the disease on the part of the health professionals (n=36/50; 72%). The causes of dissatisfaction were mainly related to a lack of knowledge about drug composition, errors or delays in diagnosis, a lack of information about suitable or contraindicated foods, or confusion with other disease conditions.According to a subjective assessment of the respondents, the percentage of household income allocated to disease-related care was mostly less than 20% of annual income (38% less than 10%, n=19/50 and 22% between 10 and 20%, n=11/50). The expenses referred to the purchase of dietary or specific foods for HFI (n=38/42; 90.48%), medication (n=30/42; 71.43%) and healthcare (n=18/42; 42.86%).More than half of the respondents (n=28/50; 56%) belonged to the patient association of the disease (AAIHF), specifically 75% of the children (n=18/24) versus only 38.46% of the adults (n=10/26) (p<0.05). Most were satisfied with the services and activities offered (n=25/28; 89.29%).Most respondents had felt discriminated against because of their disease at some time, often or continuously (n=39/50; 78%). Regardless of the frequency of discrimination, it was mainly experienced in leisure or cultural settings (n=31/40; 77.5%), school activities (n=22/40; 55%), healthcare (n=19/40; 47.5%) and/or in daily life activities (n=19/40; 47.5%). Among other aspects, many adults (n=16/26; 61.54%) but fewer children (n=8/24; 33.33%) (p<0.05) felt that better healthcare would improve the current situation (<a class="elsevierStyleCrossRef" href="#fig0015">Fig. 3</a>).<elsevierMultimedia ident="fig0015"></elsevierMultimedia>The most reliable sources of information on disease-related issues were the specialist (n=34/49; 69.39%) and the patient association (n=29/49; 59.18%) and, to a lesser extent, the Internet (n=19/49; 38.78%) or nutritionist (n=18/49; 36.73%). The pharmacist and primary care physician were reliable sources for only 8.16% of the respondents (n=4/49), and the social networks or nursing professionals ranked even lower (n=2/49; 4.08% and n=1/49; 2.04% respectively). Adults rated the specialist as less reliable compared with the group of children (56% [n=14/25] versus 83.33% [n=20/24], respectively [p<0.05]).With regard to HRQoL, 54% of the surveyed patients (n=27/50) reported no problems in any of the dimensions. Most had no problems with mobility or self-care. The patients did report some problems with daily activities and the perception of pain or discomfort, and 11.54% of the adults even reported severe pain or discomfort. With regard to anxiety or depression, 41.67% of the children and 23.08% of the adults experienced moderate problems of this kind, and in both groups a small percentage reported a greater intensity. The overall health score according to the visual analog scale (VAS) was 74.84 (18.86) (Md=80 and IQR=20), and proved higher in the children, with a score of 81.33 (13.06) (Md=80 and IQR=15), than in adults, with a score of 68.85 (21.51) (Md=70 and IQR=40) (p<0.05) (<a class="elsevierStyleCrossRef" href="#tbl0010">Table 2</a>). The correlation between age and the VAS score was not statistically significant (ρ=−0.265; p=0.063). No statistically significant differences were found between gender and quality of life, though significant differences were observed between patients whose diagnosis was confirmed before three years of onset of the first symptoms (79.10 [16.47]; [Md=80 and IQR=20]) and those in which diagnostic confirmation took place later (67.67 [19.07]; [Md=70 and IQR=35]). Since the EQ-5D-Y scale has been validated in children between 8 and 18 years of age, suppression from the analysis of the 10 children under 8 years of age resulted in a VAS score in this group of 81.07 (13.61) (Md=80 and IQR=20), the correlation between VAS and age being statistically nonsignificant (ρ=−0.234; p=0.146). Likewise, no statistically significant differences were found between a diagnosis confirmed before or after three years.<elsevierMultimedia ident="tbl0010"></elsevierMultimedia>DiscussionThe characteristics of the population with HFI in our study are similar to those of other rare diseases (RDs) in Spain (ENSERio 2016–2017)<a class="elsevierStyleCrossRef" href="#bib0155">4</a> as regards the sociodemographic profile of the patients. In addition, the diagnosis is also predominantly established in less than three years from the onset of the first symptoms, though the diagnostic rate in the first 6 months was higher in the ENSERio study than in our population, possibly because of the rapid physical and/or intellectual impairment that occurs in some rare RDs and the low specificity of the symptoms in HFI. Patients with RDs suffer more hospital admissions and are more often in possession of a disability certificate than patients with HFI (81.23% versus 4%), the latter figure being even lower than in the general population (7.26%).<a class="elsevierStyleCrossRef" href="#bib0165">6</a> The identification of HFI through fructose overload testing is the most common diagnostic method in adults, but is being decreasingly used because of its risk and low specificity. The increase in fructose malabsorption diagnostic tests using the exhaled hydrogen after oral fructose administration technique can cause serious problems in non-diagnosed HFI patients. The measurement of the enzyme activity of aldolase B (liver or intestinal biopsy) was a commonly used invasive test in past decades, but genetic testing is now the most common diagnostic method. Lack of support and treatment and/or a worsening of the disease due to a delayed diagnosis are problems affecting most patients with HFI, as it is with other RDs.<a class="elsevierStyleCrossRef" href="#bib0155">4</a>Metabolic diseases, including HFI, can lead to acute liver failure in infants under 24 months of age.<a class="elsevierStyleCrossRef" href="#bib0170">7</a> Although most patients reported no sequelae in our study, steatosis occurs in over 50% of all patients with HFI, and hepatomegaly in almost 20%.<a class="elsevierStyleCrossRef" href="#bib0175">8</a> Cases of liver adenomatosis have even been reported, though the cause is unclear.<a class="elsevierStyleCrossRef" href="#bib0180">9</a> Hereditary fructose intolerance has also been correlated to type 2 diabetes mellitus<a class="elsevierStyleCrossRef" href="#bib0185">10</a> or celiac disease,<a class="elsevierStyleCrossRef" href="#bib0190">11</a> though this was not recorded in our survey, since many patients did not consider these conditions to be related. In addition, there have been isolated reports of neurological problems secondary to acute intoxication or poor adherence to diet.<a class="elsevierStyleCrossRefs" href="#bib0140">1,12</a> In the present study sample, only three individuals reported some disability, and only one patient was using antiepileptic drugs.Although almost half of the respondents were satisfied with their healthcare, satisfaction was higher among the children, who are those that use these resources most. In general, patients visiting metabolic units report a high degree of satisfaction with the healthcare system, considering the care received to be good or very good.<a class="elsevierStyleCrossRef" href="#bib0200">13</a> The patients and their relatives consider that improved healthcare and greater knowledge and/or the training of healthcare professionals are aspects that would improve their situation. The advent of the “expert patient”, due to association affiliation and the empowerment of patients, has led to a change in patient attitude toward the professionals and the healthcare system, requiring the professionals to adapt accordingly.<a class="elsevierStyleCrossRef" href="#bib0205">14</a> Studies on the training needs of healthcare professionals in RDs are mainly conducted in the primary care setting, where it is considered more important to focus on information needs than on training needs,<a class="elsevierStyleCrossRef" href="#bib0210">15</a> since the professionals obtain information from the Internet, scientific bodies, journals and/or associations.<a class="elsevierStyleCrossRef" href="#bib0215">16</a> Similarly, the activities of the AAIHF involve the distribution of written educational material providing information on medicinal products and excipients aimed at the healthcare professional caring for patients with HFI (<a class="elsevierStyleCrossRef" href="#fig0020">Fig. 4</a>). In addition, patients with HFI consider the specialist to be the most reliable source of information (more so in individuals under 16 years of age, who are the patients that most visit specialist clinics). The infrequency of the visits of patients with HFI to primary care centers or pharmacies, and the little specific training given, may be the reasons for there being less confidence in the pharmacist, primary care physician or nursing staff.<elsevierMultimedia ident="fig0020"></elsevierMultimedia>There is no treatment to replace enzyme deficiency in HFI, but vitamin supplements are needed (vitamin C or folic acid) because of poor dietary intake due to the consumption restrictions regarding fruit and vegetables. Although most subjects have had no difficulties with access, they complain about the lack of financial assistance (since food supplements are involved) or delays in the inspection visa (e.g., vitamin C capsules), as in other RDs<a class="elsevierStyleCrossRef" href="#bib0155">4</a> or metabolic diseases where there are difficulties and a limited availability of specific food products and drugs (e.g., because of the need for magistral formulas).<a class="elsevierStyleCrossRef" href="#bib0200">13</a> The percentage use of medicines or supplements is higher in children than in adults, since they are supplements that do not improve the course or prognosis of the disease, or are not prescribed due to a lack of health attention in many of the adults. Nevertheless, the AAIHF receives many consultations related to medicines and/or sweeteners. These issues constitute the third leading cause of consultation, after diet and general consultations about the Association.<a class="elsevierStyleCrossRef" href="#bib0220">17</a> In addition, despite the mandatory legal requirements referring to alerts in the package insert and the Summary of Product Characteristics when the drug contains excipients not suitable for patients with HFI (fructose, sucrose, invert sugar, sorbitol, maltitol, lactitol and isomaltitol),<a class="elsevierStyleCrossRef" href="#bib0225">18</a> serious errors have been detected in the Summaries of Product Characteristics, such as stating glucose syrup (an excipient allowed in HFI) when in fact the product is fructose or maltitol syrup (hydrogenated glucose syrup), both of which are contraindicated in this disease.<a class="elsevierStyleCrossRef" href="#bib0230">19</a>The leisure and cultural settings are often a cause of discrimination for patients with HFI, whereas in other RDs the daily setting is mainly affected because of greater patient disability.<a class="elsevierStyleCrossRef" href="#bib0155">4</a> The reasons for discrimination are the lack of adapted meals (restaurants, schools, summer camps, etc.) or the fact that the disease is not taken seriously due to a lack of information, an increase in other more benign intolerances, or food fashions. The non-inclusion of these sugars or polyalcohols in food legislation on substances capable of producing food intolerances (such legislation being focused only on allergens)<a class="elsevierStyleCrossRef" href="#bib0235">20</a> makes it difficult to provide adequate information on labeling or in restaurants and school canteens. Furthermore, it is not mandatory for the labeling to state the composition in terms of additives (aromas, flavorings, coloring agents, etc.) that can be included in large quantities and may be accompanied by large amounts of sugar. All of this reinforces the concept of the “expert patient” who, with accurate and reliable information, must proactively self-manage his or her own diet. The needs of patients with HFI are similar to those of celiac patients, such as better labeling, direct financial support, tax benefits and a greater offer of suitable products in restaurants.<a class="elsevierStyleCrossRef" href="#bib0240">21</a>In the general population, 80% of all adults do not have any health problems.<a class="elsevierStyleCrossRef" href="#bib0245">22</a> Patients with HFI have a poorer health status and suffer more anxiety and/or depression, and difficulties in daily life activities, though they suffer less mobility and personal care problems than the general population. The same is observed in the pediatric population (VAS score 87.40 [10.55] with KIDSCREEN-10<a class="elsevierStyleCrossRef" href="#bib0250">23</a> versus 81.15 [14.16] between 8 and 14 years of age with EQ-5L-Y). Tools to measure HRQoL in children should be used with caution. In this regard, there are validated proxy versions from 6 years of age,<a class="elsevierStyleCrossRef" href="#bib0255">24</a> but these were not available free of charge during the study.The use of online surveys and social network dissemination is a simple way to contact as many affected patients as possible, this being essential in diseases with a low prevalence and wide geographic dispersion.<a class="elsevierStyleCrossRef" href="#bib0260">25</a> Despite this, one of the limitations of our study is the limited sample size recruited despite diffusion among physicians, associations and social networks. The true number of cases of HFI in Spain is not known. A prevalence of 1–9 cases per 100,000 inhabitants<a class="elsevierStyleCrossRef" href="#bib0265">26</a> (Spanish population census 46,449,874 inhabitants in July 2016 according to the National Statistical Institute) yields a theoretical number of 464–4180 cases. This is far higher than the number of cases recorded by the metabolic units or the patient association. Therefore, although the sample size was far from ideal (172–255 surveyed individuals for a margin of error of 5%, maximum heterogeneity assumptions and a confidence level of 90%), the sample may be representative of patients with HFI in Spain. Other factors may be underdiagnosis (instinctive fructose exclusion diet due to dislike of sweetness), a lack of regular visits to specialized physicians, deaths due to acute intoxications or sequelae (there are no published data on deaths in Spain, though withdrawal of fructose solutions did not occur until 2002<a class="elsevierStyleCrossRef" href="#bib0270">27</a>), non-participation in patient associations, failure to use the Internet, etc.In conclusion, the sociosanitary needs of patients with HFI are, in some aspects, unrepresented in other studies on RDs, and their profile may be more similar to that of other metabolic diseases and/or dietary intolerances. Although the disease is not particularly disabling, patients with HFI have problems which the general population does not have, mainly in relation to the leisure setting. The difficulty in establishing an adequate and correct exclusion diet can cause complications that may generate morbidities and associated healthcare costs. Although the times to diagnosis have decreased in recent years, less care and healthcare satisfaction in adults makes it necessary to emphasize their needs. In this respect, the provision of training and information to all healthcare professionals, and to society as a whole, is a key element.Authorship/collaboratorsAll the authors participated in the analysis and interpretation of the results, as well as in the writing of the manuscript and the approval of the final version. E. Izquierdo-García, as study supervisor, conceived the design, conducted data collection methodology and analysis, and drafted the manuscript. I. Escobar-Rodríguez, J.M. Manuel Moreno-Villares and I. Iglesias-Peinado participated in the design of the study and in data analysis and interpretation.Conflicts of interestThe authors declare that they have no conflicts of interest." "textoCompletoSecciones" => array:1 [ "secciones" => array:12 [ 0 => array:3 [ "identificador" => "xres1360305" "titulo" => "Abstract" "secciones" => array:4 [ 0 => array:2 [ "identificador" => "abst0005" "titulo" => "Introduction" ] 1 => array:2 [ "identificador" => "abst0010" "titulo" => "Material and methods" ] 2 => array:2 [ "identificador" => "abst0015" "titulo" => "Results" ] 3 => array:2 [ "identificador" => "abst0020" "titulo" => "Conclusions" ] ] ] 1 => array:2 [ "identificador" => "xpalclavsec1250864" "titulo" => "Keywords" ] 2 => array:3 [ "identificador" => "xres1360304" "titulo" => "Resumen" "secciones" => array:4 [ 0 => array:2 [ "identificador" => "abst0025" "titulo" => "Introducción" ] 1 => array:2 [ "identificador" => "abst0030" "titulo" => "Metodología" ] 2 => array:2 [ "identificador" => "abst0035" "titulo" => "Resultados" ] 3 => array:2 [ "identificador" => "abst0040" "titulo" => "Conclusiones" ] ] ] 3 => array:2 [ "identificador" => "xpalclavsec1250865" "titulo" => "Palabras clave" ] 4 => array:2 [ "identificador" => "sec0005" "titulo" => "Introduction" ] 5 => array:2 [ "identificador" => "sec0010" "titulo" => "Material and methods" ] 6 => array:2 [ "identificador" => "sec0015" "titulo" => "Results" ] 7 => array:2 [ "identificador" => "sec0020" "titulo" => "Discussion" ] 8 => array:2 [ "identificador" => "sec0025" "titulo" => "Authorship/collaborators" ] 9 => array:2 [ "identificador" => "sec0030" "titulo" => "Conflicts of interest" ] 10 => array:2 [ "identificador" => "xack472119" "titulo" => "Acknowledgments" ] 11 => array:1 [ "titulo" => "References" ] ] ] "pdfFichero" => "main.pdf" "tienePdf" => true "fechaRecibido" => "2019-04-02" "fechaAceptado" => "2019-06-19" "PalabrasClave" => array:2 [ "en" => array:1 [ 0 => array:4 [ "clase" => "keyword" "titulo" => "Keywords" "identificador" => "xpalclavsec1250864" "palabras" => array:4 [ 0 => "Hereditary fructose intolerance" 1 => "Rare diseases" 2 => "Patient satisfaction" 3 => "Quality of life" ] ] ] "es" => array:1 [ 0 => array:4 [ "clase" => "keyword" "titulo" => "Palabras clave" "identificador" => "xpalclavsec1250865" "palabras" => array:4 [ 0 => "Intolerancia hereditaria a la fructosa" 1 => "Enfermedades raras" 2 => "Satisfacción del paciente" 3 => "Calidad de vida" ] ] ] ] "tieneResumen" => true "resumen" => array:2 [ "en" => array:3 [ "titulo" => "Abstract" "resumen" => "IntroductionHereditary fructose intolerance is a metabolic disease due to an aldolase B deficiency. Our objective was to ascertain the social and health care needs of those with this deficiency. Material and methodsA prospective, observational study was performed. A survey of social and health care needs was conducted to hereditary fructose intolerance patients living in Spain. ResultsMost patients had been diagnosed, mainly by genetic analysis in children and based on fructose overload in adults. Population surveyed had no sequelae (72.34%) or disability (64%), and 83.33% of children and 52.38% of adults were taking drugs (p<.05) (2.06 drugs on average). Most patients had attended medical visits in the past two years, mainly in metabolic disease units (42.5%) and/or nutrition units (42.5%), but less than a half attended reference centers (mostly children [p<0.05]). Although 48% were satisfied with health care, they felt discriminated in recreational activities, school, health and/or daily activities. The most reliable sources of information were the specialized care physician (69.39%) and patients’ association (59.18%). Fifty-five percent reported no problem in any quality of life dimension, although some had problems in daily activities, pain, and anxiety. ConclusionsAlthough hereditary fructose intolerance is less disabling than other rare diseases, it is important to know the needs of those who suffer from it. Although time to diagnosis has shortened, the poorer health care and satisfaction with it perceived in adults makes it necessary to emphasize the needs of this population, and the critical need of training and information of health care professionals." "secciones" => array:4 [ 0 => array:2 [ "identificador" => "abst0005" "titulo" => "Introduction" ] 1 => array:2 [ "identificador" => "abst0010" "titulo" => "Material and methods" ] 2 => array:2 [ "identificador" => "abst0015" "titulo" => "Results" ] 3 => array:2 [ "identificador" => "abst0020" "titulo" => "Conclusions" ] ] ] "es" => array:3 [ "titulo" => "Resumen" "resumen" => "IntroducciónLa intolerancia hereditaria a la fructosa es una enfermedad metabólica debida a una deficiencia en la aldolasa B. Nuestro objetivo es conocer las necesidades sociosanitarias del colectivo. MetodologíaEstudio observacional prospectivo en el que se difundió una encuesta de necesidades sociosanitarias a pacientes con intolerancia hereditaria a la fructosa residentes en España. ResultadosLa mayoría disponían de diagnóstico, confirmado principalmente por análisis genético en menores y sobrecarga de fructosa en adultos, no padecían secuelas (72,34%) ni discapacidad (64%) y el 83,33% de niños tomaban medicamentos frente al 52,38% de adultos (p<0,05) (2,06 medicamentos de media). La mayoría acudieron a consultas en los dos últimos años, principalmente unidades de enfermedades metabólicas (42,5%) y/o nutricionista (42,5%), aunque menos de la mitad eran atendidos en centros de referencia (mayoritariamente niños [p<0,05]). El 48% estaban satisfechos con la atención sanitaria aunque se sintieron discriminados en actividades de ocio, escolares, sanitarias y/o cotidianas. Las fuentes más fiables de información fueron el médico de atención especializada (69,39%) y la asociación de pacientes (59,18%). El 54% no indicaron ningún problema en ninguna de las dimensiones de calidad de vida, aunque algunos tuvieron problemas en actividades cotidianas, dolor y ansiedad. ConclusionesAunque su perfil no sea tan discapacitante como el de otras enfermedades raras, es importante conocer las necesidades del paciente con intolerancia hereditaria a la fructosa. Aunque se han reducido los tiempos en el diagnóstico, la menor atención y satisfacción sanitaria en adultos hace necesario incidir en las necesidades de esta población, siendo clave la formación e información de los profesionales sanitarios." "secciones" => array:4 [ 0 => array:2 [ "identificador" => "abst0025" "titulo" => "Introducción" ] 1 => array:2 [ "identificador" => "abst0030" "titulo" => "Metodología" ] 2 => array:2 [ "identificador" => "abst0035" "titulo" => "Resultados" ] 3 => array:2 [ "identificador" => "abst0040" "titulo" => "Conclusiones" ] ] ] ] "NotaPie" => array:1 [ 0 => array:2 [ "etiqueta" => "☆" "nota" => "Please cite this article as: Izquierdo-García E, Escobar-Rodríguez I, Moreno-Villares JM, Iglesias-Peinado I. Necesidades sociosanitarias en pacientes con intolerancia hereditaria a la fructosa en España. Endocrinol Diabetes Nutr. 2020;67:253–262." ] ] "apendice" => array:1 [ 0 => array:1 [ "seccion" => array:1 [ 0 => array:4 [ "apendice" => "The following are the supplementary data to this article:<elsevierMultimedia ident="upi0005"></elsevierMultimedia>" "etiqueta" => "Appendix A" "titulo" => "Supplementary data" "identificador" => "sec0040" ] ] ] ] "multimedia" => array:7 [ 0 => array:7 [ "identificador" => "fig0005" "etiqueta" => "Figure 1" "tipo" => "MULTIMEDIAFIGURA" "mostrarFloat" => true "mostrarDisplay" => false "figura" => array:1 [ 0 => array:4 [ "imagen" => "gr1.jpeg" "Alto" => 2444 "Ancho" => 2167 "Tamanyo" => 429148 ] ] "descripcion" => array:1 [ "en" => "Metabolism of fructose, sorbitol, tagatose and glucose in the liver. The dashed red lines indicate the enzyme defect." ] ] 1 => array:7 [ "identificador" => "fig0010" "etiqueta" => "Figure 2" "tipo" => "MULTIMEDIAFIGURA" "mostrarFloat" => true "mostrarDisplay" => false "figura" => array:1 [ 0 => array:4 [ "imagen" => "gr2.jpeg" "Alto" => 1147 "Ancho" => 2103 "Tamanyo" => 151766 ] ] "descripcion" => array:1 [ "en" => "List of medications used." ] ] 2 => array:7 [ "identificador" => "fig0015" "etiqueta" => "Figure 3" "tipo" => "MULTIMEDIAFIGURA" "mostrarFloat" => true "mostrarDisplay" => false "figura" => array:1 [ 0 => array:4 [ "imagen" => "gr3.jpeg" "Alto" => 1985 "Ancho" => 2199 "Tamanyo" => 388545 ] ] "descripcion" => array:1 [ "en" => "Aspects for improving the current situation of the affected subjects." ] ] 3 => array:7 [ "identificador" => "fig0020" "etiqueta" => "Figure 4" "tipo" => "MULTIMEDIAFIGURA" "mostrarFloat" => true "mostrarDisplay" => false "figura" => array:2 [ 0 => array:1 [ "imagen" => "gr4a.jpeg" ] 1 => array:1 [ "imagen" => "gr4b.jpeg" ] ] "descripcion" => array:1 [ "en" => "Informative material from the Association of Patients with Hereditary Intolerance to Fructose (AAIHF) on medicinal products and excipients in HFI for healthcare professionals." ] ] 4 => array:8 [ "identificador" => "tbl0005" "etiqueta" => "Table 1" "tipo" => "MULTIMEDIATABLA" "mostrarFloat" => true "mostrarDisplay" => false "detalles" => array:1 [ 0 => array:3 [ "identificador" => "at1" "detalle" => "Table " "rol" => "short" ] ] "tabla" => array:1 [ "tablatextoimagen" => array:2 [ 0 => array:2 [ "tabla" => array:1 [ 0 => """ <table border="0" frame="\n \t\t\t\t\tvoid\n \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Diagnostic method \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Total \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Adult (≥16 years) \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Child (<16 years) \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">p \t\t\t\t\t\t\n \t\t\t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Genetic analysis \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">28 (60.87%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">8 (36.36%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">20 (83.33%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0.001 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Fructose overload \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">14 (30.43%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">9 (40.91%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">5 (20.83%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Liver biopsy \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">10 (21.74%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">7 (31.82%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">3 (12.50%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Symptoms \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">4 (8.70%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">3 (13.64%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">1 (4.17%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Intestinal biopsy \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">1 (2.17%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">1 (4.54%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0 (0.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Other methods \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">1 (2.17%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0 (0.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">1 (4.17%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Don’t know/answer \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">1 (2.17%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">1 (4.54%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0 (0.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr></tbody></table> """ ] "imagenFichero" => array:1 [ 0 => "xTab2337085.png" ] ] 1 => array:2 [ "tabla" => array:1 [ 0 => """ <table border="0" frame="\n \t\t\t\t\tvoid\n \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Time to diagnosis \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Total \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Adult (≥16 years) \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Child (<16 years) \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">p \t\t\t\t\t\t\n \t\t\t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t"><6 months \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">9 (19.56%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">1 (4.54%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">8 (33.33%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t"><0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">6 months–1 year \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">11 (23.91%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">5 (22.73%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">6 (25.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">1–3 years \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">11 (23.91%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">2 (9.09%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">9 (37.5%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t"><0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">4–9 years \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">7 (15.22%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">6 (27.27%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">1 (4.17%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t"><0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>10 years \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">8 (17.39%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">8 (36.36%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0 (0.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0.001 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " colspan="5" align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t"></td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Total surveyed subjects \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">46 (100%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">22 (100%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">24 (100%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">– \t\t\t\t\t\t\n \t\t\t\t</td></tr></tbody></table> """ ] "imagenFichero" => array:1 [ 0 => "xTab2337087.png" ] ] ] ] "descripcion" => array:1 [ "en" => "Diagnostic method and time to diagnosis from symptoms onset in HFI." ] ] 5 => array:8 [ "identificador" => "tbl0010" "etiqueta" => "Table 2" "tipo" => "MULTIMEDIATABLA" "mostrarFloat" => true "mostrarDisplay" => false "detalles" => array:1 [ 0 => array:3 [ "identificador" => "at2" "detalle" => "Table " "rol" => "short" ] ] "tabla" => array:1 [ "tablatextoimagen" => array:2 [ 0 => array:2 [ "tabla" => array:1 [ 0 => """ <table border="0" frame="\n \t\t\t\t\tvoid\n \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">HRQoL survey \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Child or adolescent(<18 years) \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Adult(≥18 years) \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">p \t\t\t\t\t\t\n \t\t\t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " colspan="4" align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Mobility</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I have no problems \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">24 (100.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">25 (96.15%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I have some problems \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0 (0.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">1 (3.85%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I have many problems \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0 (0.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0 (0.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">– \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " colspan="4" align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t"></td></tr><tr title="table-row"><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " colspan="4" align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Self-care</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I have no problems \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">24 (100.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">26 (100.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">– \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I have some problems \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0 (0.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0 (0.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">– \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I have many problems \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0 (0.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0 (0.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">– \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " colspan="4" align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t"></td></tr><tr title="table-row"><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " colspan="4" align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Daily life activities</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I have no problems \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">19 (79.17%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">19 (73.08%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I have some problems \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">5 (20.83%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">7 (26.92%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I have many problems \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0 (0.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0 (0.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">– \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " colspan="4" align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t"></td></tr><tr title="table-row"><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " colspan="4" align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Pain/discomfort</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I have no pain or discomfort \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">18 (75.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">14 (53.85%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I have moderate pain or discomfort \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">6 (25.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">9 (34.61%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I have a lot of pain or discomfort \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">0 (0.0%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">3 (11.54%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " colspan="4" align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t"></td></tr><tr title="table-row"><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " colspan="4" align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Anxiety/depression</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I am not anxious or depressed \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">13 (54.17%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">17 (65.38%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I am moderately anxious or depressed \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">10 (41.67%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">6 (23.08%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">I am very anxious or depressed \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">1 (4.17%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">3 (11.54%) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">>0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr></tbody></table> """ ] "imagenFichero" => array:1 [ 0 => "xTab2337086.png" ] ] 1 => array:2 [ "tabla" => array:1 [ 0 => """ <table border="0" frame="\n \t\t\t\t\tvoid\n \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">VAS scale \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Mean (SD) \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Mean (SD) \t\t\t\t\t\t\n \t\t\t\t\t\t</th><th class="td" title="\n \t\t\t\t\ttable-head\n \t\t\t\t " align="" valign="\n \t\t\t\t\ttop\n \t\t\t\t" scope="col" style="border-bottom: 2px solid black"> \t\t\t\t\t\t\n \t\t\t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="" valign="\n \t\t\t\t\ttop\n \t\t\t\t"> \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">81.33 (13.06) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">68.85 (21.51) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t"><0.05 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " colspan="4" align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t"></td></tr><tr title="table-row"><td class="td-with-role" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">Total surveyed subjects \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">24 \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="left" valign="\n \t\t\t\t\ttop\n \t\t\t\t">26 \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="\n \t\t\t\t\ttable-entry\n \t\t\t\t " align="char" valign="\n \t\t\t\t\ttop\n \t\t\t\t">– \t\t\t\t\t\t\n \t\t\t\t</td></tr></tbody></table> """ ] "imagenFichero" => array:1 [ 0 => "xTab2337088.png" ] ] ] ] "descripcion" => array:1 [ "en" => "Results of the EQ-5D-Y (children and adolescents) and EQ-5D (adults) health-related quality of life (HRQoL) survey." ] ] 6 => array:5 [ "identificador" => "upi0005" "tipo" => "MULTIMEDIAECOMPONENTE" "mostrarFloat" => false "mostrarDisplay" => true "Ecomponente" => array:2 [ "fichero" => "mmc1.docx" "ficheroTamanyo" => 536723 ] ] ] "bibliografia" => array:2 [ "titulo" => "References" "seccion" => array:1 [ 0 => array:2 [ "identificador" => "bibs0015" "bibliografiaReferencia" => array:27 [ 0 => array:3 [ "identificador" => "bib0140" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Errores congénitos del metabolismo de la fructosa" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:1 [ 0 => "M. 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Social and health care needs in patients with hereditary fructose intolerance in Spain

Necesidades sociosanitarias en pacientes con intolerancia hereditaria a la fructosa en España

Elsa Izquierdo-Garcíaa,b,

Corresponding author

elsa.izquierdo@salud.madrid.org

Corresponding author.

, Ismael Escobar-Rodrígueza, José Manuel Moreno-Villaresc, Irene Iglesias-Peinadod

a Servicio de Farmacia, Hospital Universitario Infanta Leonor, Madrid, Spain

b Asociación de Afectados por Intolerancia Hereditaria a la Fructosa (AAIHF), Spain

c Servicio de Pediatría, Clínica Universidad de Navarra, Madrid, Spain

d Facultad de Farmacia, Universidad Complutense de Madrid, Madrid, Spain

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    "textoCompleto" => "<span class="elsevierStyleSections"><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0065">Introduction</span><p id="par0005" class="elsevierStylePara elsevierViewall">Hereditary fructose intolerance &#40;HFI&#41; &#40;OMIM &#35;229600&#41; is a low prevalence autosomal recessive metabolic disorder &#40;1&#8211;9 cases per 100&#44;000 inhabitants&#41; resulting from a deficiency in the activity of aldolase B&#44; a key enzyme in the metabolism of fructose occurring mainly in the liver&#44; and to a lesser extent in the renal cortex and bowel &#40;<a class="elsevierStyleCrossRef" href="#fig0005">Fig&#46; 1</a>&#41;&#46; In these patients&#44; nausea&#44; vomiting&#44; perspiration&#44; lethargy&#44; shock&#44; dehydration&#44; hepatorenal impairment and&#47;or postprandial hypoglycemia rapidly occur when large amounts of fructose are consumed &#40;4&#8211;6<span class="elsevierStyleHsp" style=""></span>g&#47;kg&#47;day&#41;&#46; This situation may lead to coma and even death&#44; and can cause irreversible neurological&#44; hepatic and renal sequelae&#46; However&#44; the ongoing consumption of small amounts of fructose &#40;due to dietary transgressions or lack of a diagnosis&#41; equivalent to over 40<span class="elsevierStyleHsp" style=""></span>mg of fructose&#47;kg&#47;day can also give rise to feeding difficulties&#44; vomiting&#44; hepatomegaly&#44; edema&#44; ascites and lack of weight gain &#40;in children&#41;&#46; The metabolic and&#47;or laboratory changes are mainly due to the accumulation of the substrate of aldolase B&#44; fructose-1-phosphate&#44; causing the inhibition of liver glycogenolysis&#44; the inhibition of gluconeogenesis&#44; the inhibition of phosphomannose isomerase&#44; partial fructokinase inhibition&#44; liver alterations&#44; renal tubular damage or the depletion of ATP or inorganic phosphorus&#44; with hypophosphatemia&#44; hypermagnesemia and increased magnesium loss in urine&#44; hyperuricemia&#44; uricosuria&#44; metabolic acidosis&#44; etc&#46;<a class="elsevierStyleCrossRef" href="#bib0140"><span class="elsevierStyleSup">1</span></a></p><elsevierMultimedia ident="fig0005"></elsevierMultimedia><p id="par0010" class="elsevierStylePara elsevierViewall">After a dietary restriction of all fructose sources&#44; recovery and the disappearance of signs and symptoms occur rapidly&#44; with an excellent long-term prognosis&#44; though some patients maintain liver steatosis&#44; with normalization of the liver enzymes&#44; for years&#46; The only currently available management is a lowering in the diet of all fructose sources to &#60;1&#8211;2<span class="elsevierStyleHsp" style=""></span>g of fructose&#47;day in adults and &#60;20&#8211;40<span class="elsevierStyleHsp" style=""></span>mg&#47;kg&#47;day in children&#46;<a class="elsevierStyleCrossRef" href="#bib0140"><span class="elsevierStyleSup">1</span></a> Fructose is naturally found in fruits and vegetables&#44; saccharose &#40;disaccharide of fructose and glucose&#41; and honey&#46; Other sweeteners to be avoided are tagatose &#40;a fructose isomer metabolized by aldolase B&#41; and sorbitol &#40;as well as sweeteners containing it&#44; such as maltitol&#44; lactitol or isomaltitol&#41;&#44; which is converted into fructose by the enzyme sorbitol dehydrogenase&#46;<a class="elsevierStyleCrossRef" href="#bib0145"><span class="elsevierStyleSup">2</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">Understanding the sociosanitary needs of patients with low-prevalence or rare diseases &#40;RDs&#41; is a starting point for identifying and measuring the impact and burden of these disorders on the affected individuals and their families&#44; and social and health institutions&#46; Spanish national studies such as the ENSERio trial of the Spanish Federation of Rare Diseases &#40;<span class="elsevierStyleItalic">Federaci&#243;n Espa&#241;ola de Enfermedades Raras</span> &#91;FEDER&#93;&#41;<a class="elsevierStyleCrossRefs" href="#bib0150"><span class="elsevierStyleSup">3&#44;4</span></a> reflect public awareness of the importance and sociosanitary repercussions of these diseases upon clinicians&#44; investigators and politicians&#46;<a class="elsevierStyleCrossRef" href="#bib0160"><span class="elsevierStyleSup">5</span></a> To date&#44; no studies have been published on the sociosanitary needs of patients with HFI&#46; The present study was designed to analyze such needs in people with this disease in Spain&#46;</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0070">Material and methods</span><p id="par0020" class="elsevierStylePara elsevierViewall">A prospective observational study was carried out involving the distribution of an anonymous survey assessing the social and health needs among patients with HFI residing in Spain &#40;June 2016&#8211;February 2017&#41;&#46; The survey design was based on the questionnaire of the &#8220;Study on the sociosanitary needs of people with rare diseases in Spain&#58; the ENSERio Study &#40;FEDER&#41;&#8221;&#44; conducted on a sample of 715 individuals with RDs and their families &#40;November 2008&#8211;January 2009&#41;&#46;<a class="elsevierStyleCrossRef" href="#bib0150"><span class="elsevierStyleSup">3</span></a> The questions were adapted to our population&#44; respecting the structure and semantics in order to preserve their validity&#44; with the addition of further questions regarding improvements to the current situation&#44; the use of medicines&#44; information sources and health-related quality of life &#40;HRQoL&#41; surveys &#40;EQ-5D-Y and EQ-5D&#41;&#46; The final survey consisted of 40 questions addressing sociodemographic aspects&#44; diagnosis&#44; the degree of disability&#44; healthcare&#44; disease-related expenses&#44; patient associations and disease perception &#40;<a class="elsevierStyleCrossRef" href="#sec0040">Annex I&#44; Supplementary material</a>&#41;&#46; The study was approved by the Ethics Committee of Hospital Universitario Central de Asturias &#40;Spain&#41;&#46;</p><p id="par0025" class="elsevierStylePara elsevierViewall">Non-probabilistic sampling was performed in an attempt to reach as many HFI patients in Spain as possible&#46; The questionnaire was distributed through the Association of Patients with Hereditary Intolerance to Fructose &#40;<span class="elsevierStyleItalic">Asociaci&#243;n de Afectados por Intolerancia Hereditaria a la Fructosa</span> &#91;AAIHF&#93;&#41; via e-mail &#40;<a href="mailto:asociacionihf@gmail.com">asociacionihf&#64;gmail&#46;com</a>&#41;&#44; website &#40;<a href="http://www.aaihf.com/">http&#58;&#47;&#47;www&#46;aaihf&#46;com&#47;</a>&#41; and social networks &#40;Facebook&#174; and Twitter&#174;&#41;&#44; as well as through other associations of patients and physicians specializing in metabolic diseases&#46;</p><p id="par0030" class="elsevierStylePara elsevierViewall">Patients living in Spain with HFI diagnosed by genetic testing&#44; liver biopsy&#44; intestinal biopsy or fructose overload were included in the study&#46; Patients in the process of establishing the prognosis but with a clear suspicion of HFI based on the clinical symptoms were also included&#44; while patients with a diagnosis other than HFI &#40;e&#46;g&#46;&#44; other congenital metabolic errors or congenital or acquired fructose malabsorption&#41; and individuals with doubts about their diagnosis were excluded from the data analysis of the study&#46;</p><p id="par0035" class="elsevierStylePara elsevierViewall">Qualitative variables were reported as absolute numbers and percentages&#44; while quantitative variables were presented as the mean and standard deviation &#40;SD&#41; and&#47;or the median &#40;Md&#41; and interquartile range &#40;IQR&#41; in the event of an asymmetrical distribution&#46; The chi-squared test or Fisher&#39;s exact test was used to compare qualitative variables&#44; while the Student <span class="elsevierStyleItalic">t</span>-test or nonparametric tests &#40;in the event of a non-normal distribution&#41; were used in application to quantitative variables&#46; Statistical significance was considered for <span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;05&#46; Correlations between two variables were explored using Pearso&#39;s <span class="elsevierStyleItalic">R</span> statistic&#44; Spearman&#39;s rho &#40;<span class="elsevierStyleItalic">&#961;</span>&#41; or Kendall&#39;s tau &#40;<span class="elsevierStyleItalic">&#964;</span>&#41; statistic&#46; The SPSS version 20&#46;0 statistical package was used throughout&#46;</p></span><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0075">Results</span><p id="par0040" class="elsevierStylePara elsevierViewall">A total of 72 surveys were completed&#46; Practically incomplete or duplicate cases were excluded&#44; together with those corresponding to patients residing outside Spain or with a diagnosis other than HFI&#46; Fifty questionnaires were accepted&#44; mostly corresponding to females &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>34&#47;49&#59; 69&#46;39&#37;&#41;&#44; subjects over 16 years of age who answered the questionnaires by their own means &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>26&#47;50&#59; 52&#37;&#41;&#44; 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38&#46;23&#37;&#41;&#44; though 29&#46;41&#37; &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>10&#47;34&#41; reported no consequences due to such delay or were not aware of any consequences&#46; Most suffered no sequelae &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>34&#47;47&#59; 72&#46;34&#37;&#41; and had no disability status or had not requested official disability status &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>32&#47;50&#59; 64&#37;&#41;&#46;</p><elsevierMultimedia ident="tbl0005"></elsevierMultimedia><p id="par0050" class="elsevierStylePara elsevierViewall">Forty-four percent of those surveyed reported receiving the treatment they need for the disease &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>22&#47;50&#41;&#44; though almost one-quarter required no treatment &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>12&#47;50&#59; 24&#37;&#41;&#46; Care was provided mainly by specialized physicians in the public healthcare setting &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>27&#47;32&#59; 84&#46;37&#37;&#41;&#44; followed to a much lesser degree by private specialists &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>8&#47;32&#59; 25&#37;&#41; or public primary care &#40;PC&#41; physicians &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>7&#47;32&#59; 21&#46;87&#37;&#41;&#46; Management mainly consisted of continuous long-term or permanent treatments &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>22&#47;28&#59; 78&#46;57&#37;&#41;&#46; Most reported taking some kind of medication &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>31&#47;45&#59; 68&#46;89&#37;&#59; mean per patient 2&#46;06 &#91;0&#46;85&#93;&#59; Md<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>2&#44; IQR<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>2&#41;&#44; with greater medication in children &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>20&#47;24&#59; 83&#46;33&#37;&#41; than in adults &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>11&#47;21&#59; 52&#46;38&#37;&#41; &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;05&#41;&#46; The most commonly used medications were multivitamins&#44; vitamin C&#44; glucose&#44; and&#47;or folic acid &#40;<a class="elsevierStyleCrossRef" href="#fig0010">Fig&#46; 2</a>&#41;&#46; Most subjects had no difficulties in relation to access &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>25&#47;31&#59; 80&#46;64&#37;&#41;&#44; though concerns were expressed regarding the non-financing of treatment and difficulties and&#47;or delays in inspection visas&#46; In turn&#44; 31&#46;11&#37; &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>14&#47;45&#41; reported that they did not take any medication&#44; and none of the respondents used medical devices for HFI&#46;</p><elsevierMultimedia ident="fig0010"></elsevierMultimedia><p id="par0055" class="elsevierStylePara elsevierViewall">Most of the patients had visited a clinic due to HFI in the previous two years &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>40&#47;50&#59; 80&#37;&#41;&#44; mainly metabolic disease units &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>17&#47;40&#59; 42&#46;5&#37;&#41;&#44; dieticians or nutritionists &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>17&#47;40&#59; 42&#46;5&#37;&#41;&#44; endocrinology &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>15&#47;40&#59; 37&#46;5&#37;&#41;&#44; hepatology &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>13&#47;40&#59; 32&#46;5&#37;&#41;&#44; gastroenterology &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>12&#47;40&#59; 30&#37;&#41;&#44; allergology &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>11&#47;40&#59; 27&#46;5&#37;&#41;&#44; genetics &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>10&#47;40&#59; 25&#37;&#41; or general pediatric consultations &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>10&#47;40&#59; 25&#37;&#41;&#46; The patients that did not visit such clinics or who failed to answer were all adults&#46; Less than half &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>18&#47;40&#59; 45&#37;&#41; were seen in public reference centers&#44; with most visits being by children &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>14&#47;24&#59; 58&#46;33&#37;&#41;&#44; since only one fourth of the adults visiting clinics were seen in these units &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;05&#41;&#46; Most of the affected patients had not been hospitalized in the past two years because of HFI &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>40&#47;50&#59; 80&#37;&#41;&#44; and had not needed to travel outside their province &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>34&#47;50&#59; 68&#37;&#41;&#46; Eighty-four percent reported having undergone medical tests in the previous two years&#44; particularly biological or biochemical tests &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>39&#47;42&#59; 92&#46;86&#37;&#41;&#44; ultrasound &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>34&#47;42&#59; 80&#46;95&#37;&#41; and&#44; to a lesser extent&#44; other imaging tests &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>12&#47;42&#59; 28&#46;57&#37;&#41;&#46;</p><p id="par0060" class="elsevierStylePara elsevierViewall">Overall&#44; less than half of the respondents &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>24&#47;50&#59; 48&#37;&#41; were satisfied with the healthcare received &#40;62&#46;5&#37; in children under 16 years of age&#44; <span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>15&#47;24 versus 34&#46;61&#37; in adults&#44; <span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>9&#47;26 &#91;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#62;<span class="elsevierStyleHsp" style=""></span>0&#46;05&#93;&#41;&#44; and most reported a lack of knowledge of the disease on the part of the health professionals &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>36&#47;50&#59; 72&#37;&#41;&#46; The causes of dissatisfaction were mainly related to a lack of knowledge about drug composition&#44; errors or delays in diagnosis&#44; a lack of information about suitable or contraindicated foods&#44; or confusion with other disease conditions&#46;</p><p id="par0065" class="elsevierStylePara elsevierViewall">According to a subjective assessment of the respondents&#44; the percentage of household income allocated to disease-related care was mostly less than 20&#37; of annual income &#40;38&#37; less than 10&#37;&#44; <span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>19&#47;50 and 22&#37; between 10 and 20&#37;&#44; <span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>11&#47;50&#41;&#46; The expenses referred to the purchase of dietary or specific foods for HFI &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>38&#47;42&#59; 90&#46;48&#37;&#41;&#44; medication &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>30&#47;42&#59; 71&#46;43&#37;&#41; and healthcare &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>18&#47;42&#59; 42&#46;86&#37;&#41;&#46;</p><p id="par0070" class="elsevierStylePara elsevierViewall">More than half of the respondents &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>28&#47;50&#59; 56&#37;&#41; belonged to the patient association of the disease &#40;AAIHF&#41;&#44; specifically 75&#37; of the children &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>18&#47;24&#41; versus only 38&#46;46&#37; of the adults &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>10&#47;26&#41; &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;05&#41;&#46; Most were satisfied with the services and activities offered &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>25&#47;28&#59; 89&#46;29&#37;&#41;&#46;</p><p id="par0075" class="elsevierStylePara elsevierViewall">Most respondents had felt discriminated against because of their disease at some time&#44; often or continuously &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>39&#47;50&#59; 78&#37;&#41;&#46; Regardless of the frequency of discrimination&#44; it was mainly experienced in leisure or cultural settings &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>31&#47;40&#59; 77&#46;5&#37;&#41;&#44; school activities &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>22&#47;40&#59; 55&#37;&#41;&#44; healthcare &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>19&#47;40&#59; 47&#46;5&#37;&#41; and&#47;or in daily life activities &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>19&#47;40&#59; 47&#46;5&#37;&#41;&#46; Among other aspects&#44; many adults &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>16&#47;26&#59; 61&#46;54&#37;&#41; but fewer children &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>8&#47;24&#59; 33&#46;33&#37;&#41; &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;05&#41; felt that better healthcare would improve the current situation &#40;<a class="elsevierStyleCrossRef" href="#fig0015">Fig&#46; 3</a>&#41;&#46;</p><elsevierMultimedia ident="fig0015"></elsevierMultimedia><p id="par0080" class="elsevierStylePara elsevierViewall">The most reliable sources of information on disease-related issues were the specialist &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>34&#47;49&#59; 69&#46;39&#37;&#41; and the patient association &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>29&#47;49&#59; 59&#46;18&#37;&#41; and&#44; to a lesser extent&#44; the Internet &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>19&#47;49&#59; 38&#46;78&#37;&#41; or nutritionist &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>18&#47;49&#59; 36&#46;73&#37;&#41;&#46; The pharmacist and primary care physician were reliable sources for only 8&#46;16&#37; of the respondents &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>4&#47;49&#41;&#44; and the social networks or nursing professionals ranked even lower &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>2&#47;49&#59; 4&#46;08&#37; and <span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>1&#47;49&#59; 2&#46;04&#37; respectively&#41;&#46; Adults rated the specialist as less reliable compared with the group of children &#40;56&#37; &#91;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>14&#47;25&#93; versus 83&#46;33&#37; &#91;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>20&#47;24&#93;&#44; respectively &#91;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;05&#93;&#41;&#46;</p><p id="par0085" class="elsevierStylePara elsevierViewall">With regard to HRQoL&#44; 54&#37; of the surveyed patients &#40;<span class="elsevierStyleItalic">n</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>27&#47;50&#41; reported no problems in any of the dimensions&#46; Most had no problems with mobility or self-care&#46; The patients did report some problems with daily activities and the perception of pain or discomfort&#44; and 11&#46;54&#37; of the adults even reported severe pain or discomfort&#46; With regard to anxiety or depression&#44; 41&#46;67&#37; of the children and 23&#46;08&#37; of the adults experienced moderate problems of this kind&#44; and in both groups a small percentage reported a greater intensity&#46; The overall health score according to the visual analog scale &#40;VAS&#41; was 74&#46;84 &#40;18&#46;86&#41; &#40;Md<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>80 and IQR<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>20&#41;&#44; and proved higher in the children&#44; with a score of 81&#46;33 &#40;13&#46;06&#41; &#40;Md<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>80 and IQR<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>15&#41;&#44; than in adults&#44; with a score of 68&#46;85 &#40;21&#46;51&#41; &#40;Md<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>70 and IQR<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>40&#41; &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;05&#41; &#40;<a class="elsevierStyleCrossRef" href="#tbl0010">Table 2</a>&#41;&#46; The correlation between age and the VAS score was not statistically significant &#40;<span class="elsevierStyleItalic">&#961;</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>&#8722;0&#46;265&#59; <span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;063&#41;&#46; No statistically significant differences were found between gender and quality of life&#44; though significant differences were observed between patients whose diagnosis was confirmed before three years of onset of the first symptoms &#40;79&#46;10 &#91;16&#46;47&#93;&#59; &#91;Md<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>80 and IQR<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>20&#93;&#41; and those in which diagnostic confirmation took place later &#40;67&#46;67 &#91;19&#46;07&#93;&#59; &#91;Md<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>70 and IQR<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>35&#93;&#41;&#46; Since the EQ-5D-Y scale has been validated in children between 8 and 18 years of age&#44; suppression from the analysis of the 10 children under 8 years of age resulted in a VAS score in this group of 81&#46;07 &#40;13&#46;61&#41; &#40;Md<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>80 and IQR<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>20&#41;&#44; the correlation between VAS and age being statistically nonsignificant &#40;<span class="elsevierStyleItalic">&#961;</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>&#8722;0&#46;234&#59; <span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>0&#46;146&#41;&#46; Likewise&#44; no statistically significant differences were found between a diagnosis confirmed before or after three years&#46;</p><elsevierMultimedia ident="tbl0010"></elsevierMultimedia></span><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0080">Discussion</span><p id="par0090" class="elsevierStylePara elsevierViewall">The characteristics of the population with HFI in our study are similar to those of other rare diseases &#40;RDs&#41; in Spain &#40;ENSERio 2016&#8211;2017&#41;<a class="elsevierStyleCrossRef" href="#bib0155"><span class="elsevierStyleSup">4</span></a> as regards the sociodemographic profile of the patients&#46; In addition&#44; the diagnosis is also predominantly established in less than three years from the onset of the first symptoms&#44; though the diagnostic rate in the first 6 months was higher in the ENSERio study than in our population&#44; possibly because of the rapid physical and&#47;or intellectual impairment that occurs in some rare RDs and the low specificity of the symptoms in HFI&#46; Patients with RDs suffer more hospital admissions and are more often in possession of a disability certificate than patients with HFI &#40;81&#46;23&#37; versus 4&#37;&#41;&#44; the latter figure being even lower than in the general population &#40;7&#46;26&#37;&#41;&#46;<a class="elsevierStyleCrossRef" href="#bib0165"><span class="elsevierStyleSup">6</span></a> The identification of HFI through fructose overload testing is the most common diagnostic method in adults&#44; but is being decreasingly used because of its risk and low specificity&#46; The increase in fructose malabsorption diagnostic tests using the exhaled hydrogen after oral fructose administration technique can cause serious problems in non-diagnosed HFI patients&#46; The measurement of the enzyme activity of aldolase B &#40;liver or intestinal biopsy&#41; was a commonly used invasive test in past decades&#44; but genetic testing is now the most common diagnostic method&#46; Lack of support and treatment and&#47;or a worsening of the disease due to a delayed diagnosis are problems affecting most patients with HFI&#44; as it is with other RDs&#46;<a class="elsevierStyleCrossRef" href="#bib0155"><span class="elsevierStyleSup">4</span></a></p><p id="par0095" class="elsevierStylePara elsevierViewall">Metabolic diseases&#44; including HFI&#44; can lead to acute liver failure in infants under 24 months of age&#46;<a class="elsevierStyleCrossRef" href="#bib0170"><span class="elsevierStyleSup">7</span></a> Although most patients reported no sequelae in our study&#44; steatosis occurs in over 50&#37; of all patients with HFI&#44; and hepatomegaly in almost 20&#37;&#46;<a class="elsevierStyleCrossRef" href="#bib0175"><span class="elsevierStyleSup">8</span></a> Cases of liver adenomatosis have even been reported&#44; though the cause is unclear&#46;<a class="elsevierStyleCrossRef" href="#bib0180"><span class="elsevierStyleSup">9</span></a> Hereditary fructose intolerance has also been correlated to type 2 diabetes mellitus<a class="elsevierStyleCrossRef" href="#bib0185"><span class="elsevierStyleSup">10</span></a> or celiac disease&#44;<a class="elsevierStyleCrossRef" href="#bib0190"><span class="elsevierStyleSup">11</span></a> though this was not recorded in our survey&#44; since many patients did not consider these conditions to be related&#46; In addition&#44; there have been isolated reports of neurological problems secondary to acute intoxication or poor adherence to diet&#46;<a class="elsevierStyleCrossRefs" href="#bib0140"><span class="elsevierStyleSup">1&#44;12</span></a> In the present study sample&#44; only three individuals reported some disability&#44; and only one patient was using antiepileptic drugs&#46;</p><p id="par0100" class="elsevierStylePara elsevierViewall">Although almost half of the respondents were satisfied with their healthcare&#44; satisfaction was higher among the children&#44; who are those that use these resources most&#46; In general&#44; patients visiting metabolic units report a high degree of satisfaction with the healthcare system&#44; considering the care received to be good or very good&#46;<a class="elsevierStyleCrossRef" href="#bib0200"><span class="elsevierStyleSup">13</span></a> The patients and their relatives consider that improved healthcare and greater knowledge and&#47;or the training of healthcare professionals are aspects that would improve their situation&#46; The advent of the &#8220;expert patient&#8221;&#44; due to association affiliation and the empowerment of patients&#44; has led to a change in patient attitude toward the professionals and the healthcare system&#44; requiring the professionals to adapt accordingly&#46;<a class="elsevierStyleCrossRef" href="#bib0205"><span class="elsevierStyleSup">14</span></a> Studies on the training needs of healthcare professionals in RDs are mainly conducted in the primary care setting&#44; where it is considered more important to focus on information needs than on training needs&#44;<a class="elsevierStyleCrossRef" href="#bib0210"><span class="elsevierStyleSup">15</span></a> since the professionals obtain information from the Internet&#44; scientific bodies&#44; journals and&#47;or associations&#46;<a class="elsevierStyleCrossRef" href="#bib0215"><span class="elsevierStyleSup">16</span></a> Similarly&#44; the activities of the AAIHF involve the distribution of written educational material providing information on medicinal products and excipients aimed at the healthcare professional caring for patients with HFI &#40;<a class="elsevierStyleCrossRef" href="#fig0020">Fig&#46; 4</a>&#41;&#46; In addition&#44; patients with HFI consider the specialist to be the most reliable source of information &#40;more so in individuals under 16 years of age&#44; who are the patients that most visit specialist clinics&#41;&#46; The infrequency of the visits of patients with HFI to primary care centers or pharmacies&#44; and the little specific training given&#44; may be the reasons for there being less confidence in the pharmacist&#44; primary care physician or nursing staff&#46;</p><elsevierMultimedia ident="fig0020"></elsevierMultimedia><p id="par0105" class="elsevierStylePara elsevierViewall">There is no treatment to replace enzyme deficiency in HFI&#44; but vitamin supplements are needed &#40;vitamin C or folic acid&#41; because of poor dietary intake due to the consumption restrictions regarding fruit and vegetables&#46; Although most subjects have had no difficulties with access&#44; they complain about the lack of financial assistance &#40;since food supplements are involved&#41; or delays in the inspection visa &#40;e&#46;g&#46;&#44; vitamin C capsules&#41;&#44; as in other RDs<a class="elsevierStyleCrossRef" href="#bib0155"><span class="elsevierStyleSup">4</span></a> or metabolic diseases where there are difficulties and a limited availability of specific food products and drugs &#40;e&#46;g&#46;&#44; because of the need for magistral formulas&#41;&#46;<a class="elsevierStyleCrossRef" href="#bib0200"><span class="elsevierStyleSup">13</span></a> The percentage use of medicines or supplements is higher in children than in adults&#44; since they are supplements that do not improve the course or prognosis of the disease&#44; or are not prescribed due to a lack of health attention in many of the adults&#46; Nevertheless&#44; the AAIHF receives many consultations related to medicines and&#47;or sweeteners&#46; These issues constitute the third leading cause of consultation&#44; after diet and general consultations about the Association&#46;<a class="elsevierStyleCrossRef" href="#bib0220"><span class="elsevierStyleSup">17</span></a> In addition&#44; despite the mandatory legal requirements referring to alerts in the package insert and the Summary of Product Characteristics when the drug contains excipients not suitable for patients with HFI &#40;fructose&#44; sucrose&#44; invert sugar&#44; sorbitol&#44; maltitol&#44; lactitol and isomaltitol&#41;&#44;<a class="elsevierStyleCrossRef" href="#bib0225"><span class="elsevierStyleSup">18</span></a> serious errors have been detected in the Summaries of Product Characteristics&#44; such as stating glucose syrup &#40;an excipient allowed in HFI&#41; when in fact the product is fructose or maltitol syrup &#40;hydrogenated glucose syrup&#41;&#44; both of which are contraindicated in this disease&#46;<a class="elsevierStyleCrossRef" href="#bib0230"><span class="elsevierStyleSup">19</span></a></p><p id="par0110" class="elsevierStylePara elsevierViewall">The leisure and cultural settings are often a cause of discrimination for patients with HFI&#44; whereas in other RDs the daily setting is mainly affected because of greater patient disability&#46;<a class="elsevierStyleCrossRef" href="#bib0155"><span class="elsevierStyleSup">4</span></a> The reasons for discrimination are the lack of adapted meals &#40;restaurants&#44; schools&#44; summer camps&#44; etc&#46;&#41; or the fact that the disease is not taken seriously due to a lack of information&#44; an increase in other more benign intolerances&#44; or food fashions&#46; The non-inclusion of these sugars or polyalcohols in food legislation on substances capable of producing food intolerances &#40;such legislation being focused only on allergens&#41;<a class="elsevierStyleCrossRef" href="#bib0235"><span class="elsevierStyleSup">20</span></a> makes it difficult to provide adequate information on labeling or in restaurants and school canteens&#46; Furthermore&#44; it is not mandatory for the labeling to state the composition in terms of additives &#40;aromas&#44; flavorings&#44; coloring agents&#44; etc&#46;&#41; that can be included in large quantities and may be accompanied by large amounts of sugar&#46; All of this reinforces the concept of the &#8220;expert patient&#8221; who&#44; with accurate and reliable information&#44; must proactively self-manage his or her own diet&#46; The needs of patients with HFI are similar to those of celiac patients&#44; such as better labeling&#44; direct financial support&#44; tax benefits and a greater offer of suitable products in restaurants&#46;<a class="elsevierStyleCrossRef" href="#bib0240"><span class="elsevierStyleSup">21</span></a></p><p id="par0115" class="elsevierStylePara elsevierViewall">In the general population&#44; 80&#37; of all adults do not have any health problems&#46;<a class="elsevierStyleCrossRef" href="#bib0245"><span class="elsevierStyleSup">22</span></a> Patients with HFI have a poorer health status and suffer more anxiety and&#47;or depression&#44; and difficulties in daily life activities&#44; though they suffer less mobility and personal care problems than the general population&#46; The same is observed in the pediatric population &#40;VAS score 87&#46;40 &#91;10&#46;55&#93; with KIDSCREEN-10<a class="elsevierStyleCrossRef" href="#bib0250"><span class="elsevierStyleSup">23</span></a> versus 81&#46;15 &#91;14&#46;16&#93; between 8 and 14 years of age with EQ-5L-Y&#41;&#46; Tools to measure HRQoL in children should be used with caution&#46; In this regard&#44; there are validated proxy versions from 6 years of age&#44;<a class="elsevierStyleCrossRef" href="#bib0255"><span class="elsevierStyleSup">24</span></a> but these were not available free of charge during the study&#46;</p><p id="par0120" class="elsevierStylePara elsevierViewall">The use of online surveys and social network dissemination is a simple way to contact as many affected patients as possible&#44; this being essential in diseases with a low prevalence and wide geographic dispersion&#46;<a class="elsevierStyleCrossRef" href="#bib0260"><span class="elsevierStyleSup">25</span></a> Despite this&#44; one of the limitations of our study is the limited sample size recruited despite diffusion among physicians&#44; associations and social networks&#46; The true number of cases of HFI in Spain is not known&#46; A prevalence of 1&#8211;9 cases per 100&#44;000 inhabitants<a class="elsevierStyleCrossRef" href="#bib0265"><span class="elsevierStyleSup">26</span></a> &#40;Spanish population census 46&#44;449&#44;874 inhabitants in July 2016 according to the National Statistical Institute&#41; yields a theoretical number of 464&#8211;4180 cases&#46; This is far higher than the number of cases recorded by the metabolic units or the patient association&#46; Therefore&#44; although the sample size was far from ideal &#40;172&#8211;255 surveyed individuals for a margin of error of 5&#37;&#44; maximum heterogeneity assumptions and a confidence level of 90&#37;&#41;&#44; the sample may be representative of patients with HFI in Spain&#46; Other factors may be underdiagnosis &#40;instinctive fructose exclusion diet due to dislike of sweetness&#41;&#44; a lack of regular visits to specialized physicians&#44; deaths due to acute intoxications or sequelae &#40;there are no published data on deaths in Spain&#44; though withdrawal of fructose solutions did not occur until 2002<a class="elsevierStyleCrossRef" href="#bib0270"><span class="elsevierStyleSup">27</span></a>&#41;&#44; non-participation in patient associations&#44; failure to use the Internet&#44; etc&#46;</p><p id="par0125" class="elsevierStylePara elsevierViewall">In conclusion&#44; the sociosanitary needs of patients with HFI are&#44; in some aspects&#44; unrepresented in other studies on RDs&#44; and their profile may be more similar to that of other metabolic diseases and&#47;or dietary intolerances&#46; Although the disease is not particularly disabling&#44; patients with HFI have problems which the general population does not have&#44; mainly in relation to the leisure setting&#46; The difficulty in establishing an adequate and correct exclusion diet can cause complications that may generate morbidities and associated healthcare costs&#46; Although the times to diagnosis have decreased in recent years&#44; less care and healthcare satisfaction in adults makes it necessary to emphasize their needs&#46; In this respect&#44; the provision of training and information to all healthcare professionals&#44; and to society as a whole&#44; is a key element&#46;</p></span><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0085">Authorship&#47;collaborators</span><p id="par0130" class="elsevierStylePara elsevierViewall">All the authors participated in the analysis and interpretation of the results&#44; as well as in the writing of the manuscript and the approval of the final version&#46; E&#46; Izquierdo-Garc&#237;a&#44; as study supervisor&#44; conceived the design&#44; conducted data collection methodology and analysis&#44; and drafted the manuscript&#46; I&#46; Escobar-Rodr&#237;guez&#44; J&#46;M&#46; Manuel Moreno-Villares and I&#46; Iglesias-Peinado participated in the design of the study and in data analysis and interpretation&#46;</p></span><span id="sec0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0090">Conflicts of interest</span><p id="par0135" class="elsevierStylePara elsevierViewall">The authors declare that they have no conflicts of interest&#46;</p></span></span>"
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        "resumen" => "<span id="abst0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0010">Introduction</span><p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">Hereditary fructose intolerance is a metabolic disease due to an aldolase B deficiency&#46; Our objective was to ascertain the social and health care needs of those with this deficiency&#46;</p></span> <span id="abst0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0015">Material and methods</span><p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">A prospective&#44; observational study was performed&#46; A survey of social and health care needs was conducted to hereditary fructose intolerance patients living in Spain&#46;</p></span> <span id="abst0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0020">Results</span><p id="spar0015" class="elsevierStyleSimplePara elsevierViewall">Most patients had been diagnosed&#44; mainly by genetic analysis in children and based on fructose overload in adults&#46; Population surveyed had no sequelae &#40;72&#46;34&#37;&#41; or disability &#40;64&#37;&#41;&#44; and 83&#46;33&#37; of children and 52&#46;38&#37; of adults were taking drugs &#40;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>&#46;05&#41; &#40;2&#46;06 drugs on average&#41;&#46; Most patients had attended medical visits in the past two years&#44; mainly in metabolic disease units &#40;42&#46;5&#37;&#41; and&#47;or nutrition units &#40;42&#46;5&#37;&#41;&#44; but less than a half attended reference centers &#40;mostly children &#91;<span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;05&#93;&#41;&#46; Although 48&#37; were satisfied with health care&#44; they felt discriminated in recreational activities&#44; school&#44; health and&#47;or daily activities&#46; The most reliable sources of information were the specialized care physician &#40;69&#46;39&#37;&#41; and patients&#8217; association &#40;59&#46;18&#37;&#41;&#46; Fifty-five percent reported no problem in any quality of life dimension&#44; although some had problems in daily activities&#44; pain&#44; and anxiety&#46;</p></span> <span id="abst0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0025">Conclusions</span><p id="spar0020" class="elsevierStyleSimplePara elsevierViewall">Although hereditary fructose intolerance is less disabling than other rare diseases&#44; it is important to know the needs of those who suffer from it&#46; Although time to diagnosis has shortened&#44; the poorer health care and satisfaction with it perceived in adults makes it necessary to emphasize the needs of this population&#44; and the critical need of training and information of health care professionals&#46;</p></span>"
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        "resumen" => "<span id="abst0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0035">Introducci&#243;n</span><p id="spar0025" class="elsevierStyleSimplePara elsevierViewall">La intolerancia hereditaria a la fructosa es una enfermedad metab&#243;lica debida a una deficiencia en la aldolasa B&#46; Nuestro objetivo es conocer las necesidades sociosanitarias del colectivo&#46;</p></span> <span id="abst0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">Metodolog&#237;a</span><p id="spar0030" class="elsevierStyleSimplePara elsevierViewall">Estudio observacional prospectivo en el que se difundi&#243; una encuesta de necesidades sociosanitarias a pacientes con intolerancia hereditaria a la fructosa residentes en Espa&#241;a&#46;</p></span> <span id="abst0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Resultados</span><p id="spar0035" class="elsevierStyleSimplePara elsevierViewall">La mayor&#237;a dispon&#237;an de diagn&#243;stico&#44; confirmado principalmente por an&#225;lisis gen&#233;tico en menores y sobrecarga de fructosa en adultos&#44; no padec&#237;an secuelas &#40;72&#44;34&#37;&#41; ni discapacidad &#40;64&#37;&#41; y el 83&#44;33&#37; de ni&#241;os tomaban medicamentos frente al 52&#44;38&#37; de adultos &#40;p<span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#44;05&#41; &#40;2&#44;06 medicamentos de media&#41;&#46; La mayor&#237;a acudieron a consultas en los dos &#250;ltimos a&#241;os&#44; principalmente unidades de enfermedades metab&#243;licas &#40;42&#44;5&#37;&#41; y&#47;o nutricionista &#40;42&#44;5&#37;&#41;&#44; aunque menos de la mitad eran atendidos en centros de referencia &#40;mayoritariamente ni&#241;os &#91;p<span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#44;05&#93;&#41;&#46; El 48&#37; estaban satisfechos con la atenci&#243;n sanitaria aunque se sintieron discriminados en actividades de ocio&#44; escolares&#44; sanitarias y&#47;o cotidianas&#46; Las fuentes m&#225;s fiables de informaci&#243;n fueron el m&#233;dico de atenci&#243;n especializada &#40;69&#44;39&#37;&#41; y la asociaci&#243;n de pacientes &#40;59&#44;18&#37;&#41;&#46; El 54&#37; no indicaron ning&#250;n problema en ninguna de las dimensiones de calidad de vida&#44; aunque algunos tuvieron problemas en actividades cotidianas&#44; dolor y ansiedad&#46;</p></span> <span id="abst0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Conclusiones</span><p id="spar0040" class="elsevierStyleSimplePara elsevierViewall">Aunque su perfil no sea tan discapacitante como el de otras enfermedades raras&#44; es importante conocer las necesidades del paciente con intolerancia hereditaria a la fructosa&#46; Aunque se han reducido los tiempos en el diagn&#243;stico&#44; la menor atenci&#243;n y satisfacci&#243;n sanitaria en adultos hace necesario incidir en las necesidades de esta poblaci&#243;n&#44; siendo clave la formaci&#243;n e informaci&#243;n de los profesionales sanitarios&#46;</p></span>"
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                  \t\t\t\t\t\t</th><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Child &#40;&#60;16 years&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t" scope="col" style="border-bottom: 2px solid black"><span class="elsevierStyleItalic">p</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">Genetic analysis&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">28 &#40;60&#46;87&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">8 &#40;36&#46;36&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">20 &#40;83&#46;33&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0&#46;001&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">Fructose overload&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">14 &#40;30&#46;43&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">9 &#40;40&#46;91&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">5 &#40;20&#46;83&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#62;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">Liver biopsy&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">10 &#40;21&#46;74&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">7 &#40;31&#46;82&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">3 &#40;12&#46;50&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#62;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">Symptoms&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">4 &#40;8&#46;70&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">3 &#40;13&#46;64&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">1 &#40;4&#46;17&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#62;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">Intestinal biopsy&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">1 &#40;2&#46;17&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">1 &#40;4&#46;54&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0 &#40;0&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#62;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">Other methods&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">1 &#40;2&#46;17&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0 &#40;0&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">1 &#40;4&#46;17&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#62;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">Don&#8217;t know&#47;answer&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">1 &#40;2&#46;17&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">1 &#40;4&#46;54&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0 &#40;0&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#62;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
              ]
              "imagenFichero" => array:1 [
                0 => "xTab2337085.png"
              ]
            ]
            1 => array:2 [
              "tabla" => array:1 [
                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Time to diagnosis&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Total&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Adult &#40;&#8805;16 years&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Child &#40;&#60;16 years&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t" scope="col" style="border-bottom: 2px solid black"><span class="elsevierStyleItalic">p</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#60;6 months&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">9 &#40;19&#46;56&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">1 &#40;4&#46;54&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">8 &#40;33&#46;33&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#60;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">6 months&#8211;1 year&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">11 &#40;23&#46;91&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">5 &#40;22&#46;73&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">6 &#40;25&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#62;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">1&#8211;3 years&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">11 &#40;23&#46;91&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">2 &#40;9&#46;09&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">9 &#40;37&#46;5&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#60;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">4&#8211;9 years&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">7 &#40;15&#46;22&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">6 &#40;27&#46;27&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">1 &#40;4&#46;17&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#60;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#62;10 years&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">8 &#40;17&#46;39&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">8 &#40;36&#46;36&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0 &#40;0&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0&#46;001&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " colspan="5" align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">Total surveyed subjects&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">46 &#40;100&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">22 &#40;100&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">24 &#40;100&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#8211;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
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                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t" scope="col" style="border-bottom: 2px solid black">HRQoL survey&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Child or adolescent&#40;&#60;18 years&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Adult&#40;&#8805;18 years&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th><th class="td" title="\n
                  \t\t\t\t\ttable-head\n
                  \t\t\t\t  " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t" scope="col" style="border-bottom: 2px solid black"><span class="elsevierStyleItalic">p</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " colspan="4" align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleItalic">Mobility</span></td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>I have no problems&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">24 &#40;100&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">25 &#40;96&#46;15&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#62;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>I have some problems&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0 &#40;0&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">1 &#40;3&#46;85&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#62;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>I have many problems&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0 &#40;0&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0 &#40;0&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#8211;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " colspan="4" align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " colspan="4" align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleItalic">Self-care</span></td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>I have no problems&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">24 &#40;100&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">26 &#40;100&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#8211;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>I have some problems&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0 &#40;0&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0 &#40;0&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#8211;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>I have many problems&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0 &#40;0&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0 &#40;0&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#8211;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " colspan="4" align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " colspan="4" align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleItalic">Daily life activities</span></td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>I have no problems&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">19 &#40;79&#46;17&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">19 &#40;73&#46;08&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#62;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>I have some problems&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">5 &#40;20&#46;83&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">7 &#40;26&#46;92&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#62;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>I have many problems&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0 &#40;0&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0 &#40;0&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#8211;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " colspan="4" align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " colspan="4" align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleItalic">Pain&#47;discomfort</span></td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>I have no pain or discomfort&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">18 &#40;75&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">14 &#40;53&#46;85&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#62;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>I have moderate pain or discomfort&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">6 &#40;25&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">9 &#40;34&#46;61&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">&#62;0&#46;05&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t ; entry_with_role_rowhead " align="left" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t"><span class="elsevierStyleHsp" style=""></span>I have a lot of pain or discomfort&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">0 &#40;0&#46;0&#37;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="\n
                  \t\t\t\t\ttable-entry\n
                  \t\t\t\t  " align="char" valign="\n
                  \t\t\t\t\ttop\n
                  \t\t\t\t">3 &#40;11&#46;54&#37;&#41;&nbsp;\t\t\t\t\t\t\n
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                      "Revista" => array:5 [
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Article information

ISSN: 25300180
Original language: English

DOI:10.1016/j.endien.2020.06.004

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Year/Month	Html	Pdf	Total

2024 November	6	3	9
2024 October	29	11	40
2024 September	38	7	45
2024 August	30	4	34
2024 July	28	2	30
2024 June	58	10	68
2024 May	37	9	46
2024 April	38	8	46
2024 March	46	7	53
2024 February	52	9	61
2024 January	85	6	91
2023 December	73	14	87
2023 November	73	4	77
2023 October	86	1	87
2023 September	36	5	41
2023 August	33	2	35
2023 July	52	4	56
2023 June	50	2	52
2023 May	82	1	83
2023 April	85	4	89
2023 March	103	5	108
2023 February	66	8	74
2023 January	84	6	90
2022 December	54	14	68
2022 November	61	17	78
2022 October	67	11	78
2022 September	79	9	88
2022 August	106	13	119
2022 July	79	20	99
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2022 May	53	11	64
2022 April	51	6	57
2022 March	59	9	68
2022 February	52	2	54
2022 January	107	11	118
2021 December	70	8	78
2021 November	62	8	70
2021 October	55	13	68
2021 September	61	14	75
2021 August	43	2	45
2021 July	25	6	31
2021 June	19	4	23
2021 May	44	6	50
2021 April	94	3	97
2021 March	41	4	45
2021 February	29	8	37
2021 January	18	6	24
2020 December	12	3	15
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2020 September	1	1	2

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