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Symptom burden and health-related quality of life in hemodialysis patients
Gusti Ayu Ary Antari
Corresponding author
aryantari@unud.ac.id

Corresponding author.
, Desak Made Widyanthari
Division of Medical Surgical Nursing, Department of Nursing, Faculty of Medicine, Universitas Udayana, Indonesia
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    "textoCompleto" => "<span class="elsevierStyleSections"><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0015">Introduction</span><p id="par0005" class="elsevierStylePara elsevierViewall">Patients with kidney failure who are undergoing hemodialysis regularly experience a wide range of symptoms&#46;<a class="elsevierStyleCrossRefs" href="#bib0100"><span class="elsevierStyleSup">1&#44;2</span></a> Chronic kidney disease is one of the major global health problems&#44; which affects 10&#37; of the world population&#46; Worldwide&#44; over two million people receive dialysis to treat kidney failure&#46;<a class="elsevierStyleCrossRef" href="#bib0110"><span class="elsevierStyleSup">3</span></a> Kidney failure is oftentimes debilitating&#46; The patient may report multi-symptoms related to the accumulation of uremic toxins&#44; fluid retention&#44; the side effects of the treatment&#44; or other medical comorbidities&#46;<a class="elsevierStyleCrossRefs" href="#bib0115"><span class="elsevierStyleSup">4&#44;5</span></a> In addition to therapeutic effects&#44; hemodialysis also causes a symptom burden&#46; There are three mechanisms by which symptom burden related to hemodialysis occurs&#44; namely as a consequence of the hemodialysis procedure&#44; a mechanical consequence&#44; and a consequence of persistent uremia&#46;<a class="elsevierStyleCrossRef" href="#bib0125"><span class="elsevierStyleSup">6</span></a></p><p id="par0010" class="elsevierStylePara elsevierViewall">Symptom burden in hemodialysis patients often goes unnoticed by health care professionals&#46; The symptoms include physical symptoms such as pain&#44; itching&#44; and nausea&#44; and physiological symptoms such as anxiety and depression&#46;<a class="elsevierStyleCrossRefs" href="#bib0100"><span class="elsevierStyleSup">1&#44;2&#44;7</span></a> Existing studies have suggested that these are some common symptoms in hemodialysis patients&#46; Approximately 71&#37; &#40;a range of 12&#8211;97&#37;&#41; of hemodialysis patients experience fatigue&#47;tiredness&#46; Fatigue is a predictor for cardiac events and mortality of hemodialysis patients&#46; Other physical symptoms with a high prevalence among hemodialysis patients are pruritus&#44; which is experienced by 55&#37; patients &#40;a range of 10&#8211;77&#37;&#41;&#44; anorexia&#44; experienced by 49&#37; patients &#40;a range of 25&#8211;61&#37;&#41;&#44; and pain&#44; experienced by 47&#37; patients &#40;a range of 8&#8211;82&#37;&#41;&#46; Anxiety and depression are also common symptoms with a prevalence of 38&#37; and 27&#37; respectively&#46;<a class="elsevierStyleCrossRefs" href="#bib0100"><span class="elsevierStyleSup">1&#44;8&#44;9</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">Health-Related Quality of Life &#40;HRQOL&#41; is a basic aspect of health and has a strong correlation with morbidity and mortality&#46;<a class="elsevierStyleCrossRef" href="#bib0145"><span class="elsevierStyleSup">10</span></a> The goal of treatment of patients with hemodialysis is not only to prolong their survival rate but also to improve their HRQOL&#46; Health professionals often only focus on modifying hemodialysis prescription such as the duration of hemodialysis or dialysate composition to decrease morbidity related to kidney failure&#44; even if it is ineffective&#46; Recent research suggests that symptom burden in hemodialysis patients may be more important than the objective clinical assessments in determining HRQL&#46; Therefore&#44; an assessment of symptom burden should be an important aspect of quality care for hemodialysis patients&#46;<a class="elsevierStyleCrossRef" href="#bib0150"><span class="elsevierStyleSup">11</span></a></p><p id="par0020" class="elsevierStylePara elsevierViewall">The modified Edmonton Symptom Assessment System &#40;ESAS&#41; is an instrument that has been used in palliative care&#46; This instrument has recently been used to assess symptom burden in patients with kidney failure undergoing hemodialysis&#46; This instrument is short&#44; simple&#44; and can be used repeatedly in the hemodialysis unit&#46; This study aimed to identify the correlation between symptom burden and HRQOL in hemodialysis patients&#46;</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0020">Methods</span><p id="par0025" class="elsevierStylePara elsevierViewall">A cross-sectional design was used in this study to identify the correlation between symptom burden and the HRQOL score among hemodialysis patients&#46; This study was conducted from July to August 2019 in the hemodialysis unit of Mangusada District Hospital and Wangaya District Hospital in Bali&#46; The research samples were selected through consecutive sampling&#46; The samples in this study were kidney failure patients who were undergoing long-term hemodialysis twice per week&#46; Patients were excluded if they were not undergoing hemodialysis regularly&#44; were younger than 18 years&#44; refused to participate&#44; had unstable hemodynamics during the hemodialysis process&#44; and were unable to complete the questionnaires because of language barriers or cognitive impairment&#46; This study involved 100 hemodialysis patients&#46;</p></span><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0025">Measurement</span><p id="par0030" class="elsevierStylePara elsevierViewall">The symptom burden was assessed using the modified Edmonton Symptom Assessment System &#40;ESAS&#41;&#46; The modified ESAS is a well-established instrument and used extensively in palliative care settings&#46;<a class="elsevierStyleCrossRef" href="#bib0150"><span class="elsevierStyleSup">11</span></a> More recently&#44; the modified ESAS has been used to measure the physical and psychological symptom burdens in patients with kidney failure&#46; This questionnaire has been validated for use among patients with kidney failure&#46;<a class="elsevierStyleCrossRefs" href="#bib0150"><span class="elsevierStyleSup">11&#44;12</span></a> The modified ESAS was used to measure ten common symptoms in hemodialysis patients including pain&#44; tiredness&#44; decreased well-being&#44; itching&#44; decreased appetite&#44; drowsiness&#44; depression&#44; anxiety&#44; nausea&#44; and shortness of breath&#46; Symptoms were scored using a visual analog scale of 0&#8211;10 &#40;higher scores indicate greater symptom severity&#41;&#46; The overall symptom score is defined as the sum of the scores for all symptoms &#40;a range of 0&#8211;100&#41;&#46;</p><p id="par0035" class="elsevierStylePara elsevierViewall">The HRQOL was measured using the Kidney Dialysis Quality of Life Short Form &#40;KDQOL-SF<span class="elsevierStyleSup">TM</span>&#41; version 1&#46;3&#44; which consists of 43 kidney disease-targeted items&#44; as well as 36 health survey items &#40;RAND 36-item health survey 1&#46;0 or SF-36<span class="elsevierStyleSup">TM</span>&#41;&#44; which provide a generic core and an overall health rating item&#46;<a class="elsevierStyleCrossRef" href="#bib0160"><span class="elsevierStyleSup">13</span></a> The SF-36 represents an alternative calculation to two summary scores&#58; the mental health composite &#40;MHC&#41; and the physical health composite &#40;PHC&#41;&#46; The SF-36 was scored according to the recommended methods for the RAND&#46;<a class="elsevierStyleCrossRefs" href="#bib0160"><span class="elsevierStyleSup">13&#44;14</span></a></p><p id="par0040" class="elsevierStylePara elsevierViewall">Data on the patients&#8217; age&#44; sex&#44; occupation&#44; duration of hemodialysis&#44; hemodialysis schedule&#44; and hemoglobin concentration were collected&#46;</p></span><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0030">Data analysis</span><p id="par0045" class="elsevierStylePara elsevierViewall">The respondents&#8217; characteristics were described by measures of central tendency or frequencies&#46; Descriptive statistics were also used to describe the 10 symptoms on the modified ESAS&#44; KDQOL-SF summary score&#44; PHC&#44; MHC&#44; and kidney disease-targeted items&#46; The Pearson&#39;s product-moment correlation test was conducted to analyze the correlation between symptom burden and HRQOL&#46; The variables were found to be statistically significant with a <span class="elsevierStyleItalic">p</span> value below 0&#46;05&#46;</p></span><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0035">Ethical considerations</span><p id="par0050" class="elsevierStylePara elsevierViewall">The ethical approval for this research was obtained from the Ethical Review Committee of the Faculty of Medicine&#44; Udayana University-Sanglah Hospital&#46;</p></span><span id="sec0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">Results</span><p id="par0055" class="elsevierStylePara elsevierViewall">One hundred respondents participated in this study and their demographic data are shown in <a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>&#46; The mean age of the respondents was 53&#46;86 years&#44; the mean length of hemodialysis treatment was 3&#46;44 years&#44; and the mean hemoglobin concentration was 10&#46;08<span class="elsevierStyleHsp" style=""></span>mg&#47;dL&#46; As many as 65 respondents &#40;65&#37;&#41; were male and 52 respondents &#40;52&#37;&#41; had an afternoon hemodialysis schedule&#46; The respondents reported a mean &#40;<span class="elsevierStyleItalic">SD</span>&#41; of 12&#46;6 &#40;6&#46;27&#41; for the total score of symptom distress and a mean &#40;<span class="elsevierStyleItalic">SD</span>&#41; of 1&#46;62 &#40;1&#46;25&#41; for moderate or severe symptoms&#46;</p><elsevierMultimedia ident="tbl0005"></elsevierMultimedia><p id="par0060" class="elsevierStylePara elsevierViewall"><a class="elsevierStyleCrossRef" href="#tbl0010">Table 2</a> summarizes the mean score for each of the modified ESAS symptoms&#46; Tiredness had the highest mean score compared to the other symptoms &#40;Mean<span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>3&#46;17&#59; <span class="elsevierStyleItalic">SD</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>1&#46;96&#41;&#46; The KDQOL-SF demonstrated a mean of 54&#46;74 &#40;5&#46;62&#41; for the overall score&#44; a mean of 33&#46;25 &#40;2&#46;70&#41; for kidney-disease targeted items&#44; a mean of 11&#46;26 &#40;3&#46;14&#41; for PHC&#44; and a mean of 10&#46;21 &#40;1&#46;52&#41; for MHC&#46; <a class="elsevierStyleCrossRef" href="#tbl0015">Table 3</a> shows a negative correlation between symptom burden and the overall HRQOL &#40;<span class="elsevierStyleItalic">r</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>&#8722;0&#46;244&#44; <span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;05&#41;&#46;</p><elsevierMultimedia ident="tbl0010"></elsevierMultimedia><elsevierMultimedia ident="tbl0015"></elsevierMultimedia></span><span id="sec0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Discussion</span><p id="par0065" class="elsevierStylePara elsevierViewall">Hemodialysis patients demonstrate lower HRQOL than the general population&#46; Unfortunately&#44; in the last two decades&#44; HRQOL has not improved significantly&#46; The explanation for this situation is that the patients&#8217; symptom burden is rarely measured and treated in clinical practice&#46; Health professionals are often only concerned with the hemodialysis prescription such as the duration of hemodialysis treatment&#46;<a class="elsevierStyleCrossRef" href="#bib0170"><span class="elsevierStyleSup">15</span></a></p><p id="par0070" class="elsevierStylePara elsevierViewall">Patients on long-term hemodialysis treatment suffer from several complex physical and physiological symptoms&#46; The most common symptoms are fatigue&#44; pain&#44; pruritus&#44; depression&#44; anorexia&#44; anxiety&#44; shortness of breath&#44; and cramps&#46; This study showed tiredness&#47;fatigue as having the highest mean score &#40;3&#46;17&#41; compared to the other symptoms in the modified ESAS&#46; Chronic fatigue in hemodialysis patients has a strong relationship with comorbidity and mortality&#46; Fatigue also has an association with negative mood states such as anxiety&#46; These symptoms may exacerbate each other and affect all the dimensions in quality of life&#46;<a class="elsevierStyleCrossRefs" href="#bib0170"><span class="elsevierStyleSup">15&#44;16</span></a></p><p id="par0075" class="elsevierStylePara elsevierViewall">The results of this study show that the mean number of symptoms among the hemodialysis patients is 12&#46;6 &#40;<span class="elsevierStyleItalic">SD</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>6&#46;27&#41;&#46; Almutary et al&#46; measured symptom burden amongst 436 patients with dialysis modalities&#44; with the mean number of symptoms being 14&#46;65 &#40;<span class="elsevierStyleItalic">SD</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>7&#46;49&#41;&#46; This finding indicates that the symptom burden in dialysis patients is twice higher than that in non-dialysis patients&#46;<a class="elsevierStyleCrossRef" href="#bib0180"><span class="elsevierStyleSup">17</span></a></p><p id="par0080" class="elsevierStylePara elsevierViewall">This study shows a negative relationship between the overall symptom burden and HRQOL&#46; This result is clinically relevant and interventions to reduce symptom burden may have the most significant impact on the quality of life&#46; Weisbord et al&#46; studied the correlation between symptom burden and HRQOL&#46; The study found that both the overall symptom burden and severity were associated with impaired HRQOL&#46; Symptom burden has the potential to affect both the PHC and MHC in HRQOL&#46;<a class="elsevierStyleCrossRef" href="#bib0185"><span class="elsevierStyleSup">18</span></a></p><p id="par0085" class="elsevierStylePara elsevierViewall">The modified ESAS is a set of tools based on 10 predefined symptoms to assess the physical and emotional symptoms &#40;see Methods&#41;&#46; The use of the modified ESAS has been reported and well validated in studies involving dialysis patients&#46;<a class="elsevierStyleCrossRef" href="#bib0150"><span class="elsevierStyleSup">11</span></a> However&#44; since ESAS relies on patients&#8217; self-reported symptoms&#44; it has several limitations particularly related to variations in patients&#8217; perceptions regarding the symptoms being evaluated&#46; A study by Watanabe et al&#46; attempted to ask 20 patients about their perception of the modified ESAS and reported that some patients found it hard to distinguish between tiredness and drowsiness&#44; and the others had difficulty in interpreting such terms as depression&#44; anxiety&#44; appetite and well-being&#46;<a class="elsevierStyleCrossRef" href="#bib0190"><span class="elsevierStyleSup">19</span></a> Similar problems may be found in kidney-failure patients and clinicians may see this as an opportunity to make modifications and develop some adjustments to improve the applicability of this symptom measurement&#46; The limitation of this study is that not all symptoms were measured&#46; Some hemodialysis patients also experienced cramps&#44; intradialytic hypotension&#44; and dizziness&#46;</p></span><span id="sec0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Conclusions</span><p id="par0090" class="elsevierStylePara elsevierViewall">HRQOL is a substantial outcome of the treatment for kidney failure patients&#46; Symptom burden appeared to have negative impacts on HRQOL&#46; Therefore&#44; based on this finding&#44; we need to provide a comprehensive program that can reduce symptom burden and is effective to improve the quality of life among hemodialysis patients&#46;</p></span><span id="sec0050" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0055">Funding</span><p id="par0100" class="elsevierStylePara elsevierViewall">This work was supported by Universitas Udayana &#40;Grant Number 86&#47;UN14&#46;2&#46;2&#46;VII&#46;10&#47;2019&#41;&#46;</p></span><span id="sec0045" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0060">Conflict of interest</span><p id="par0095" class="elsevierStylePara elsevierViewall">The authors declare no conflict of interest&#46;</p></span></span>"
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        "resumen" => "<span id="abst0005" class="elsevierStyleSection elsevierViewall"><p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">Health-Related Quality of Life &#40;HRQOL&#41; is a substantial outcome of the treatment of kidney failure&#46; Hemodialysis patients report a tremendous symptom burden which appears to be associated with HRQOL&#46; This study aimed to identify symptom burden and the association between symptom burden and HRQOL&#46; This study used a cross-sectional design&#46; One hundred hemodialysis patients completed the modified Edmonton Symptom Assessment System &#40;ESAS&#41; and Kidney Dialysis Quality of Life Short Form &#40;KDQOL-SF&#41;&#46; The mean of the total modified ESAS scores was 12&#46;6 &#40;<span class="elsevierStyleItalic">SD</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>6&#46;27&#41; and the overall HRQOL score was 54&#46;74 &#40;<span class="elsevierStyleItalic">SD</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>5&#46;62&#41;&#46; There was a correlation between symptom burden and HRQOL scores &#40;<span class="elsevierStyleItalic">r</span><span class="elsevierStyleHsp" style=""></span>&#61;<span class="elsevierStyleHsp" style=""></span>&#8722;0&#46;244&#59; <span class="elsevierStyleItalic">p</span><span class="elsevierStyleHsp" style=""></span>&#60;<span class="elsevierStyleHsp" style=""></span>0&#46;05&#41;&#46; The symptom burden in the hemodialysis patients was significant and had a negative correlation with the overall HRQOL&#46; This study provides data for institutional programs to reduce symptom burden and improve the quality of life in hemodialysis patients&#46;</p></span>"
      ]
    ]
    "NotaPie" => array:1 [
      0 => array:2 [
        "etiqueta" => "&#9734;"
        "nota" => "<p class="elsevierStyleNotepara" id="npar0010">Peer-review under responsibility of the scientific committee of the International Nursing Research Conference of Udayana University&#46; Full-text and the content of it is under responsibility of authors of the article&#46;</p>"
      ]
    ]
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                  \t\t\t\t" scope="col" style="border-bottom: 2px solid black">Mean &#40;<span class="elsevierStyleItalic">SD</span>&#41; or &#37;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">53&#46;86 &#40;12&#46;12&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t"><span class="elsevierStyleItalic">Duration of hemodialysis treatment &#40;in years&#41;</span>&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t">52 &#40;52&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t">0&#46;91 &#40;1&#46;64&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t">1&#46;01 &#40;1&#46;65&#41;&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t\ttable-entry\n
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                  \t\t\t\t  " align="char" valign="\n
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                  \t\t\t\t">0&#46;39 &#40;1&#46;24&#41;&nbsp;\t\t\t\t\t\t\n
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