Dignified blindness and age-related macular degeneration. A necessary multidisciplinary approach

Fernández-Vigo, J.Á.; Fernández-Vigo, J.I.; Serrano Garijo, P.; Donate-López, J.
doi:10.1016/j.oftale.2018.05.016
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    "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0005" class="elsevierStylePara elsevierViewall">By way of introduction to the concept of dignified blindness&#44; it is appropriate to make reference to dignified death&#44; understanding the latter as the last act of our lives which&#44; setting aside legal or ethical definitions&#44; entails the right to pass on without physical or mental pain&#44; in company and in reasonable humane conditions&#44; 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&#46;</p><p id="par0010" class="elsevierStylePara elsevierViewall">The concept of dignified blindness follows a similar path&#46; It means to become blind and live as blind people live but in the absence of physical and mental suffering&#44; supported by balanced medical and therapeutic attention&#44; avoiding the extremes of therapeutic obstinacy or cruelty and neglect&#46;</p><p id="par0015" class="elsevierStylePara elsevierViewall">Accordingly&#44; both concepts are similar but involve some particularities&#46; In the case of death&#44; everything comes to an end&#46; In the case of blindness&#44; the important thing is not the end of the lifecycle characterized by vision&#44; or what Carroll called &#8220;the death of the seer&#8221;&#44;<a class="elsevierStyleCrossRef" href="#bib0095"><span class="elsevierStyleSup">1</span></a> but the beginning of another cycle in which a new form of living&#44; far from what we regard as normal and unavoidably requiring adaptations&#46;</p><p id="par0020" class="elsevierStylePara elsevierViewall">Blindness is regarded as an individual tragedy and has been treated as such&#44; but here we propose a different approach&#58; blindness caused by age-related macular degeneration &#40;AMD&#41; which involves social and human dimensions and which&#44; due to its overwhelming epidemiology&#44; brings to the foreground the debate about the need of a multidisciplinary approach&#46;</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&#44; particularly in developed countries&#46;<a class="elsevierStyleCrossRef" href="#bib0100"><span class="elsevierStyleSup">2</span></a> Statistics are alarming&#46; It is estimated that by 2040 there will be almost 20 million AMD patients in Europe&#44; 4 million with the more advanced form of the disease&#46;<a class="elsevierStyleCrossRef" href="#bib0105"><span class="elsevierStyleSup">3</span></a> In Caucasian Americans&#44; the incidence of advanced AMD is 293&#44;000 new cases per year&#44; at a rate that quadruples in each decade of age&#46;<a class="elsevierStyleCrossRef" href="#bib0110"><span class="elsevierStyleSup">4</span></a> Therefore&#44; age is a critical factor and&#44; with the increase in longevity&#44; the issue will acquire enormous proportions&#46;</p><p id="par0030" class="elsevierStylePara elsevierViewall">AMD is surrounded by an excessive number of unanswered questions and few and partial responses&#46; These must be resolved with rigorous and broad protocols designed from the multidisciplinary viewpoint&#46;</p><p id="par0035" class="elsevierStylePara elsevierViewall">Broadly&#44; said viewpoints can be summarized in a number of issues&#58;</p><p id="par0040" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">The social and human focus</span>&#58; 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&#46;<a class="elsevierStyleCrossRef" href="#bib0115"><span class="elsevierStyleSup">5</span></a> In addition&#44; said damages unavoidably involve their families who must assume the burden without any support in detriment of their resources &#40;transport&#44; loss of working hours&#44; expenses in care homes&#44; caregivers&#44; etc&#46;&#41;&#46; Thus&#44; AMD becomes a first-order social and health problem which still remains on the sidelines&#46;</p><p id="par0045" class="elsevierStylePara elsevierViewall">In the context of patients with AMD&#44; the psychological factors which until now have been ignored are becoming a key factor&#46;<a class="elsevierStyleCrossRefs" href="#bib0120"><span class="elsevierStyleSup">6&#8211;9</span></a> The relationship between AMD and depression symptoms is well documented&#44; with a broad range of prevalence between 15&#37; and 44&#37; and between 9&#37; and 75&#37; for anxiety symptoms&#46; In addition&#44; somatoform and adaptation disorders are also prevalent&#44; including suicidal thoughts&#44; which negatively influence the quality of life of AMD patients&#46;<a class="elsevierStyleCrossRefs" href="#bib0120"><span class="elsevierStyleSup">6&#8211;9</span></a></p><p id="par0050" class="elsevierStylePara elsevierViewall">Said psychological disorders are caused by the fear of blindness&#44; potential complications&#44; falls&#44; depending on others and becoming a burden&#44; as well as by utter loneliness&#46; In addition there is also fear of not being treated and not finding an efficient treatment for their disease&#46;<a class="elsevierStyleCrossRefs" href="#bib0120"><span class="elsevierStyleSup">6&#44;7&#44;10&#8211;12</span></a></p><p id="par0055" class="elsevierStylePara elsevierViewall">At present&#44; 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&#46; These are generally experienced by patients as stressful moments&#44; with previous anxiety in up to 54&#37; of patients beginning 2 days prior to the injection&#44; in addition to the fear of the pain these could entail&#46;<a class="elsevierStyleCrossRefs" href="#bib0130"><span class="elsevierStyleSup">8&#44;9&#44;11</span></a> As observed by Sivaprasad et al&#46; fear arises due to lack of knowledge and information as well as due to uncertainty about the results&#46;<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&#44; including transport&#44; involves an average of 4&#46;5<span class="elsevierStyleHsp" style=""></span>h which&#44; for an employed patient&#44; involves missing a full day&#39;s work in 53&#37; of cases&#46; In addition&#44; 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&#46;<a class="elsevierStyleCrossRef" href="#bib0150"><span class="elsevierStyleSup">12</span></a></p><p id="par0060" class="elsevierStylePara elsevierViewall">Accordingly&#44; as described by Polat et al&#46;&#44; the most frequent causes of patient noncompliance with intravitreal treatments are fear of the injection &#40;30&#37;&#41;&#44; doubts about the benefits of the treatment &#40;21&#37;&#41;&#44; lack of knowledge about the disease&#44; the high number of appointments and the distance between home and the hospital&#46;<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&#44; with a diagnostic that is very difficult to integrate when the natural evolution of this degenerative disease is fully understood&#46;</p><p id="par0070" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Assistance approach</span>&#58; in the first place&#44; it is necessary to establish protocols to achieve therapeutic goals and minimize infra-treatment of AMD patients&#46; However&#44; linked treatments should be avoided&#44; the attention processes should be improved by minimizing massification&#44; improving attention&#44; diminishing trips and providing human and material support&#46; In other words&#44; avoiding the simplification of treatment to OCT-injection for neovascular AMD&#44; or OCT-examination in atrophic AMD cases&#46; We should be against unprecise indications and complacent treatments in a system with limited resources&#44; considering the visual benefit but also pondering the psychological burden this entails for patients&#46; And even though the priority of ophthalmologists is fighting blindness&#44; 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&#46;</p><p id="par0075" class="elsevierStylePara elsevierViewall">It is necessary to emphasize the need to respect patients&#8217; decisions&#44; 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&#44;<a class="elsevierStyleCrossRef" href="#bib0160"><span class="elsevierStyleSup">14</span></a> as well as the reasons for choosing one option or another&#46; It has been described that the most positive interactions for patients with health professionals are those referring to the human aspects of the relationship&#46; To feel heard&#44; attended to&#44; to feel that they are participating in the decisions about the disease and are able to express their concerns&#44; are regarded as essential motivators in healthcare provision&#46;<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&#58;</span> 30 years ago&#44; diabetic retinopathy was the cloud that cast shadows on ophthalmology because in many ways it was comparable to the current AMD epidemic&#46; However&#44; far-reaching multicenter studies were designed that produced a more controllable disease with a generally acceptable visual prognostic&#46;</p><p id="par0085" class="elsevierStylePara elsevierViewall">Even though AMD is a problem with multiple dimensions&#44; efforts must focus on addressing the problem by developing treatments&#44; which even without healing the disease&#44; are able to minimize the impact thereof in the quality of life of patients&#46; The only way to achieve this is joining efforts in research&#46; It is essential to label the disease properly&#44; to determine risk factors and variables &#40;genetic and ethnical aspects&#44; geographic distribution&#44; lifestyle habits&#44; etc&#46;&#41; in order to obtain an early diagnostic and ideally to focus treatment on the basis of genetic characteristics&#44; moving forward toward personalized medicine&#44; applying technological solutions in examinations as well as treatments to diminish the handicap and dependency&#46;</p><p id="par0090" class="elsevierStylePara elsevierViewall">It should be pointed out that the media and social networks are heralding cures for blindness&#46; We must make an effort to ensure that widespread information is truthful and responsible&#46;</p><p id="par0095" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">The economic approach</span>&#58; a cost analysis must be carried out to improve the profitability of an overwhelmed system that facilitates waste due to lack of control&#44; based on the fact that at present there are no systems in place to adequately assess the health results we are obtaining&#46;<a class="elsevierStyleCrossRef" href="#bib0170"><span class="elsevierStyleSup">16</span></a> This issue could be improved by establishing a national registry&#44; similar to those in other countries&#44; to perform <span class="elsevierStyleItalic">big data</span> analytics&#46;</p><p id="par0100" class="elsevierStylePara elsevierViewall">It has been recently reported that Eylea &#40;aflibercept&#41; &#40;Bayer Healthcare&#44; Berlin&#44; Germany&#41; is the second most sold medicament worldwide&#44; with a sales of 3&#46;7 billion US dollars in 2017&#46;<a class="elsevierStyleCrossRef" href="#bib0175"><span class="elsevierStyleSup">17</span></a> The numbers being managed in some of the large national hospitals are breathtaking&#46; A study carried out by Donate et al&#46;&#44;<a class="elsevierStyleCrossRef" href="#bib0180"><span class="elsevierStyleSup">18</span></a> estimated a cost of &#8364;61&#160;for a visit and &#8364;807&#160;for administering treatment for AMD&#46; With these numbers&#44; a mean cost of &#8364;8&#44;161 was obtained for one year treatment with ranibizumab&#44; and it was estimated that to improve 0&#46;01 visual acuity decimals in the Snellen scale involves a mean cost of &#8364;633 if there is no atrophy and of &#8364;1&#44;055 if there is&#46; Said study concluded that treatment for neovascular AMD is efficient and cost-effective according to the standards of European countries&#46; However&#44; such an investment should be supplemented with other measures&#46; Accordingly&#44; the overall approach to address these issues must include instruments such as preventive&#44; therapeutic and palliative measures&#46; And for developing these measures&#44; multidisciplinary units should be established with health professionals from different areas&#58;</p><p id="par0105" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">The ophthalmologist</span>&#58; we must become aware of the social problems caused by AMD instead of limiting our approach to the exclusively ocular problem&#46; Ophthalmologists should be aware and sensitive about the repercussions of the disease&#46; High macular resolution units should be established in specialty centers to reduce waiting times and facilitate access to health services for these patients&#46;</p><p id="par0110" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Primary care physicians&#44; nurses&#44; optometrists and educators</span> should become knowledgeable about the disease and cooperate in comprehensive therapeutic guidance&#46; 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&#44; cancer or Alzheimer&#39;s disease&#44; with education programs for patients and families&#46;</p><p id="par0115" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Psychologists</span> should be brought in as a fundamental pillar for assessment&#44; prevention and treatment of depression and anxiety in the context of poor vision or blindness secondary to AMD&#46; They should provide instructions to manage expectations&#44; resources for managing the fear of blindness and of treatment and to provide encouragement in the daily aspects of life or recreational activities&#44; supporting patients in the process of adaptation to the new situation&#46;</p><p id="par0120" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Social workers</span>&#58; the entire burden of the problem should not be borne by families&#46; Social support is needed&#44; for example&#44; to cover primary needs such as organizing and administering medicaments for visually impaired patients&#46; In rural environments&#44; geographical dispersion is a huge problem&#44; although family support is very limited in cities due to employment requirements&#46;</p><p id="par0125" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Visual rehabilitation</span> becomes an essential issue&#46; It should be much more extended and regulated for patients with poor vision and blindness&#46; Diminished vision training should be available to facilitate gradual adaptation to the new circumstances&#46;</p><p id="par0130" class="elsevierStylePara elsevierViewall">In summary&#44; 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&#44; avoiding the extremes of therapeutic obstinacy and neglect&#46; In this way it would be possible to enable a dignified life for patients when they unfortunately lose their eyesight&#44; making their blindness only a health problem instead of an undignified way of living&#46;</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&#46;</p></span></span>"
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        "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Please cite this article as&#58; Fern&#225;ndez-Vigo J&#193;&#44; Fern&#225;ndez-Vigo JI&#44; Serrano Garijo P&#44; Donate-L&#243;pez J&#46; Ceguera digna y degeneraci&#243;n macular asociada a la edad&#46; Un necesario enfoque multidisciplinar&#46; Arch Soc Esp Oftalmol&#46; 2018&#59;93&#58;519&#8211;522&#46;</p>"
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