Editorial
Dignified blindness and age-related macular degeneration. A necessary multidisciplinary approach
Ceguera digna y degeneración macular asociada a la edad. Un necesario enfoque multidisciplinar
J.Á. Fernández-Vigoa,b,c, J.I. Fernández-Vigoa,b,d,
, P. Serrano Garijoe, J. Donate-Lópezd
Corresponding author
a Centro Internacional de Oftalmología Avanzada, Madrid, Spain
b Centro Internacional de Oftalmología Avanzada, Badajoz, Spain
c Departamento de Oftalmología, Universidad de Extremadura, Badajoz, Spain
d Departamento de Oftalmología, Hospital Universitario Clínico San Carlos, Instituto de Investigación Sanitaria San Carlos, Madrid, Spain
e Departamento de Programación, Evaluación y Desarrollo, Dirección General de Personas Mayores y Servicios Sociales, Área de Gobierno de Equidad, Derechos Sociales y Empleo, Ayuntamiento de Madrid, Madrid, Spain
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"apellidos" => "Donate-López" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">d</span>" "identificador" => "aff0020" ] ] ] ] "afiliaciones" => array:5 [ 0 => array:3 [ "entidad" => "Centro Internacional de Oftalmología Avanzada, Madrid, Spain" "etiqueta" => "a" "identificador" => "aff0005" ] 1 => array:3 [ "entidad" => "Centro Internacional de Oftalmología Avanzada, Badajoz, Spain" "etiqueta" => "b" "identificador" => "aff0010" ] 2 => array:3 [ "entidad" => "Departamento de Oftalmología, Universidad de Extremadura, Badajoz, Spain" "etiqueta" => "c" "identificador" => "aff0015" ] 3 => array:3 [ "entidad" => "Departamento de Oftalmología, Hospital Universitario Clínico San Carlos, Instituto de Investigación Sanitaria San Carlos, Madrid, Spain" "etiqueta" => "d" "identificador" => "aff0020" ] 4 => array:3 [ "entidad" => "Departamento de Programación, Evaluación y Desarrollo, Dirección General de Personas Mayores y Servicios Sociales, Área de Gobierno de Equidad, Derechos Sociales y Empleo, Ayuntamiento de Madrid, Madrid, Spain" "etiqueta" => "e" "identificador" => "aff0025" ] ] "correspondencia" => array:1 [ 0 => array:3 [ "identificador" => "cor0005" "etiqueta" => "⁎" "correspondencia" => "<span class="elsevierStyleItalic">Corresponding author</span>." ] ] ] ] "titulosAlternativos" => array:1 [ "es" => array:1 [ "titulo" => "Ceguera digna y degeneración macular asociada a la edad. Un necesario enfoque multidisciplinar" ] ] "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0005" class="elsevierStylePara elsevierViewall">By way of introduction to the concept of dignified blindness, it is appropriate to make reference to dignified death, understanding the latter as the last act of our lives which, setting aside legal or ethical definitions, entails the right to pass on without physical or mental pain, in company and in reasonable humane conditions, subject to medical actions aimed at avoiding unnecessary prolongation of life in the form of therapeutic obstinacy as well as deliberate shortening thereof or neglect.</p><p id="par0010" class="elsevierStylePara elsevierViewall">The concept of dignified blindness follows a similar path. It means to become blind and live as blind people live but in the absence of physical and mental suffering, supported by balanced medical and therapeutic attention, avoiding the extremes of therapeutic obstinacy or cruelty and neglect.</p><p id="par0015" class="elsevierStylePara elsevierViewall">Accordingly, both concepts are similar but involve some particularities. In the case of death, everything comes to an end. In the case of blindness, the important thing is not the end of the lifecycle characterized by vision, or what Carroll called “the death of the seer”,<a class="elsevierStyleCrossRef" href="#bib0095"><span class="elsevierStyleSup">1</span></a> but the beginning of another cycle in which a new form of living, far from what we regard as normal and unavoidably requiring adaptations.</p><p id="par0020" class="elsevierStylePara elsevierViewall">Blindness is regarded as an individual tragedy and has been treated as such, but here we propose a different approach: blindness caused by age-related macular degeneration (AMD) which involves social and human dimensions and which, due to its overwhelming epidemiology, brings to the foreground the debate about the need of a multidisciplinary approach.</p><p id="par0025" class="elsevierStylePara elsevierViewall">AMD is one of the main causes of poor vision and blindness in individuals over 50 years old, particularly in developed countries.<a class="elsevierStyleCrossRef" href="#bib0100"><span class="elsevierStyleSup">2</span></a> Statistics are alarming. It is estimated that by 2040 there will be almost 20 million AMD patients in Europe, 4 million with the more advanced form of the disease.<a class="elsevierStyleCrossRef" href="#bib0105"><span class="elsevierStyleSup">3</span></a> In Caucasian Americans, the incidence of advanced AMD is 293,000 new cases per year, at a rate that quadruples in each decade of age.<a class="elsevierStyleCrossRef" href="#bib0110"><span class="elsevierStyleSup">4</span></a> Therefore, age is a critical factor and, with the increase in longevity, the issue will acquire enormous proportions.</p><p id="par0030" class="elsevierStylePara elsevierViewall">AMD is surrounded by an excessive number of unanswered questions and few and partial responses. These must be resolved with rigorous and broad protocols designed from the multidisciplinary viewpoint.</p><p id="par0035" class="elsevierStylePara elsevierViewall">Broadly, said viewpoints can be summarized in a number of issues:</p><p id="par0040" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">The social and human focus</span>: the handicap produced by AMD involves collateral damages that drastically diminish the quality of life of patients targeting a segment of the population during a particularly vulnerable period of their lives.<a class="elsevierStyleCrossRef" href="#bib0115"><span class="elsevierStyleSup">5</span></a> In addition, said damages unavoidably involve their families who must assume the burden without any support in detriment of their resources (transport, loss of working hours, expenses in care homes, caregivers, etc.). Thus, AMD becomes a first-order social and health problem which still remains on the sidelines.</p><p id="par0045" class="elsevierStylePara elsevierViewall">In the context of patients with AMD, the psychological factors which until now have been ignored are becoming a key factor.<a class="elsevierStyleCrossRefs" href="#bib0120"><span class="elsevierStyleSup">6–9</span></a> The relationship between AMD and depression symptoms is well documented, with a broad range of prevalence between 15% and 44% and between 9% and 75% for anxiety symptoms. In addition, somatoform and adaptation disorders are also prevalent, including suicidal thoughts, which negatively influence the quality of life of AMD patients.<a class="elsevierStyleCrossRefs" href="#bib0120"><span class="elsevierStyleSup">6–9</span></a></p><p id="par0050" class="elsevierStylePara elsevierViewall">Said psychological disorders are caused by the fear of blindness, potential complications, falls, depending on others and becoming a burden, as well as by utter loneliness. In addition there is also fear of not being treated and not finding an efficient treatment for their disease.<a class="elsevierStyleCrossRefs" href="#bib0120"><span class="elsevierStyleSup">6,7,10–12</span></a></p><p id="par0055" class="elsevierStylePara elsevierViewall">At present, the only option with sufficient evidence to approach AMD efficiently and with potentially positive effects for the quality of life of patients is intravitreal injections of antiangiogenic medicaments. These are generally experienced by patients as stressful moments, with previous anxiety in up to 54% of patients beginning 2 days prior to the injection, in addition to the fear of the pain these could entail.<a class="elsevierStyleCrossRefs" href="#bib0130"><span class="elsevierStyleSup">8,9,11</span></a> As observed by Sivaprasad et al. fear arises due to lack of knowledge and information as well as due to uncertainty about the results.<a class="elsevierStyleCrossRef" href="#bib0130"><span class="elsevierStyleSup">8</span></a> Said authors observed that the main desire of patients is to obtain the same visual results with the least possible number of visits and intravitreal injections because every appointment, including transport, involves an average of 4.5<span class="elsevierStyleHsp" style=""></span>h which, for an employed patient, involves missing a full day's work in 53% of cases. In addition, it has been described that pain and anxiety are significantly lower when patients attend the medical practice in the company of a relative or friend and when they have a distraction in the waiting room to diminish their stress.<a class="elsevierStyleCrossRef" href="#bib0150"><span class="elsevierStyleSup">12</span></a></p><p id="par0060" class="elsevierStylePara elsevierViewall">Accordingly, as described by Polat et al., the most frequent causes of patient noncompliance with intravitreal treatments are fear of the injection (30%), doubts about the benefits of the treatment (21%), lack of knowledge about the disease, the high number of appointments and the distance between home and the hospital.<a class="elsevierStyleCrossRef" href="#bib0155"><span class="elsevierStyleSup">13</span></a></p><p id="par0065" class="elsevierStylePara elsevierViewall">To the increased incidence of AMD we must add the scarcity of long-term efficient or healing treatments, with a diagnostic that is very difficult to integrate when the natural evolution of this degenerative disease is fully understood.</p><p id="par0070" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Assistance approach</span>: in the first place, it is necessary to establish protocols to achieve therapeutic goals and minimize infra-treatment of AMD patients. However, linked treatments should be avoided, the attention processes should be improved by minimizing massification, improving attention, diminishing trips and providing human and material support. In other words, avoiding the simplification of treatment to OCT-injection for neovascular AMD, or OCT-examination in atrophic AMD cases. We should be against unprecise indications and complacent treatments in a system with limited resources, considering the visual benefit but also pondering the psychological burden this entails for patients. And even though the priority of ophthalmologists is fighting blindness, we should avoid therapeutic obstinacy by setting clear criteria establishing when it is adequate to suspend treatment and establishing crucially important legal support for these decisions.</p><p id="par0075" class="elsevierStylePara elsevierViewall">It is necessary to emphasize the need to respect patients’ decisions, which inevitably involve true informed consents free of false expectations that clearly explain the prognostic of the disease and what can be expected of a treatment if the decision is to receive it and what would happen without treatment,<a class="elsevierStyleCrossRef" href="#bib0160"><span class="elsevierStyleSup">14</span></a> as well as the reasons for choosing one option or another. It has been described that the most positive interactions for patients with health professionals are those referring to the human aspects of the relationship. To feel heard, attended to, to feel that they are participating in the decisions about the disease and are able to express their concerns, are regarded as essential motivators in healthcare provision.<a class="elsevierStyleCrossRef" href="#bib0165"><span class="elsevierStyleSup">15</span></a></p><p id="par0080" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">The ophthalmological research approach:</span> 30 years ago, diabetic retinopathy was the cloud that cast shadows on ophthalmology because in many ways it was comparable to the current AMD epidemic. However, far-reaching multicenter studies were designed that produced a more controllable disease with a generally acceptable visual prognostic.</p><p id="par0085" class="elsevierStylePara elsevierViewall">Even though AMD is a problem with multiple dimensions, efforts must focus on addressing the problem by developing treatments, which even without healing the disease, are able to minimize the impact thereof in the quality of life of patients. The only way to achieve this is joining efforts in research. It is essential to label the disease properly, to determine risk factors and variables (genetic and ethnical aspects, geographic distribution, lifestyle habits, etc.) in order to obtain an early diagnostic and ideally to focus treatment on the basis of genetic characteristics, moving forward toward personalized medicine, applying technological solutions in examinations as well as treatments to diminish the handicap and dependency.</p><p id="par0090" class="elsevierStylePara elsevierViewall">It should be pointed out that the media and social networks are heralding cures for blindness. We must make an effort to ensure that widespread information is truthful and responsible.</p><p id="par0095" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">The economic approach</span>: a cost analysis must be carried out to improve the profitability of an overwhelmed system that facilitates waste due to lack of control, based on the fact that at present there are no systems in place to adequately assess the health results we are obtaining.<a class="elsevierStyleCrossRef" href="#bib0170"><span class="elsevierStyleSup">16</span></a> This issue could be improved by establishing a national registry, similar to those in other countries, to perform <span class="elsevierStyleItalic">big data</span> analytics.</p><p id="par0100" class="elsevierStylePara elsevierViewall">It has been recently reported that Eylea (aflibercept) (Bayer Healthcare, Berlin, Germany) is the second most sold medicament worldwide, with a sales of 3.7 billion US dollars in 2017.<a class="elsevierStyleCrossRef" href="#bib0175"><span class="elsevierStyleSup">17</span></a> The numbers being managed in some of the large national hospitals are breathtaking. A study carried out by Donate et al.,<a class="elsevierStyleCrossRef" href="#bib0180"><span class="elsevierStyleSup">18</span></a> estimated a cost of €61 for a visit and €807 for administering treatment for AMD. With these numbers, a mean cost of €8,161 was obtained for one year treatment with ranibizumab, and it was estimated that to improve 0.01 visual acuity decimals in the Snellen scale involves a mean cost of €633 if there is no atrophy and of €1,055 if there is. Said study concluded that treatment for neovascular AMD is efficient and cost-effective according to the standards of European countries. However, such an investment should be supplemented with other measures. Accordingly, the overall approach to address these issues must include instruments such as preventive, therapeutic and palliative measures. And for developing these measures, multidisciplinary units should be established with health professionals from different areas:</p><p id="par0105" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">The ophthalmologist</span>: we must become aware of the social problems caused by AMD instead of limiting our approach to the exclusively ocular problem. Ophthalmologists should be aware and sensitive about the repercussions of the disease. High macular resolution units should be established in specialty centers to reduce waiting times and facilitate access to health services for these patients.</p><p id="par0110" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Primary care physicians, nurses, optometrists and educators</span> should become knowledgeable about the disease and cooperate in comprehensive therapeutic guidance. They should be trained on the limitations and lifestyles of these patients in order to organize support activities similar to those provided to patients with diabetes, cancer or Alzheimer's disease, with education programs for patients and families.</p><p id="par0115" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Psychologists</span> should be brought in as a fundamental pillar for assessment, prevention and treatment of depression and anxiety in the context of poor vision or blindness secondary to AMD. They should provide instructions to manage expectations, resources for managing the fear of blindness and of treatment and to provide encouragement in the daily aspects of life or recreational activities, supporting patients in the process of adaptation to the new situation.</p><p id="par0120" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Social workers</span>: the entire burden of the problem should not be borne by families. Social support is needed, for example, to cover primary needs such as organizing and administering medicaments for visually impaired patients. In rural environments, geographical dispersion is a huge problem, although family support is very limited in cities due to employment requirements.</p><p id="par0125" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Visual rehabilitation</span> becomes an essential issue. It should be much more extended and regulated for patients with poor vision and blindness. Diminished vision training should be available to facilitate gradual adaptation to the new circumstances.</p><p id="par0130" class="elsevierStylePara elsevierViewall">In summary, AMD is a chronic disease requiring a multidisciplinary and coordinated effort in order to apply individual treatment guidelines and improve the quality of life of patients in all dimensions, avoiding the extremes of therapeutic obstinacy and neglect. In this way it would be possible to enable a dignified life for patients when they unfortunately lose their eyesight, making their blindness only a health problem instead of an undignified way of living.</p><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0005">Conflict of interests</span><p id="par0135" class="elsevierStylePara elsevierViewall">No conflict of interests or funding sources were declared by the authors.</p></span></span>" "textoCompletoSecciones" => array:1 [ "secciones" => array:2 [ 0 => array:2 [ "identificador" => "sec0005" "titulo" => "Conflict of interests" ] 1 => array:1 [ "titulo" => "References" ] ] ] "pdfFichero" => "main.pdf" "tienePdf" => true "NotaPie" => array:1 [ 0 => array:2 [ "etiqueta" => "☆" "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Please cite this article as: Fernández-Vigo JÁ, Fernández-Vigo JI, Serrano Garijo P, Donate-López J. Ceguera digna y degeneración macular asociada a la edad. Un necesario enfoque multidisciplinar. Arch Soc Esp Oftalmol. 2018;93:519–522.</p>" ] ] "bibliografia" => array:2 [ "titulo" => "References" "seccion" => array:1 [ 0 => array:2 [ "identificador" => "bibs0015" "bibliografiaReferencia" => array:18 [ 0 => array:3 [ "identificador" => "bib0095" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Blindness. What it is, what it does, and how to live with it" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:1 [ 0 => "T.J. 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