Living with Geographic Atrophy: An Ethnographic Study
Living with Geographic Atrophy: An Ethnographic Study
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DOI：
10.1007/s40123-019-0160-3
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发表时间：
2019-03-01
影响因子：
3.3
通讯作者：
Ferrara, Daniela
中科院分区：
文献类型：
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作者：
Sivaprasad, Sobha;Tschosik, Elizabeth A.;Ferrara, Daniela
IntroductionThe具体的影响，从病人的角度来看地图状萎缩（GA），一个先进的形式，年龄相关性黄斑变性（AMD），是不好理解的methodsAn人种学研究进行了了解的影响，双边GA继发于AMD的日常功能，通过观察定期活动在家里进行，并通过半结构化的采访。合格的受试者具有明确的GA诊断，包括存在玻璃疣，视力较好的眼睛中至少一个椎间盘区域的GA病变大小，并且没有其他混淆的眼科诊断。通过视频记录和现场记录收集数据，并通过编码视频成绩单进行分析。结果影响来自英国、美国或德国的16名受试者中两名以上的功能影响领域是日常生活活动（阅读困难16例，驾驶困难12例;和看电影，电视，或戏剧，n=11），情绪（挫折和失明恐惧，各n=7），社交/休闲（干扰爱好，n=8，减少社交活动，n=4），身体（n=4）和经济（n=10）。受试者的最佳矫正视力（BCVA）的20/100或更好的，在更好的看到眼睛（n=10）报告类似的功能影响，那些BCVA的差于20/100在他们的更好的看到眼睛（n=5）。需要更大规模的定性和定量研究来量化患者体验并评估BCVA评分与GA影响之间的相关性。
IntroductionThe specific impact from the patient's perspective of geographic atrophy (GA), an advanced form of age-related macular degeneration (AMD), is not well understood.MethodsAn ethnographic study was conducted to understand the impact of bilateral GA secondary to AMD on daily functioning by observing regular activities performed at home and through semi-structured interviews. Eligible subjects had a definitive GA diagnosis, including presence of drusen, GA lesion size of at least one disc area in the better-seeing eye, and no other confounding ophthalmologic diagnosis. Data were collected via video recordings and field notes, and analyzed by coding video transcripts.ResultsFunctional impact domains affecting more than two of the 16 subjects from the United Kingdom, United States, or Germany were activities of daily living (difficulty reading, n=16; driving, n=12; and watching movies, television, or theater, n=11), emotional (frustration, and fear of blindness, n=7 each), social/leisure (interference with hobbies, n=8, and diminished social activities, n=4), physical (n=4), and financial (n=10). Subjects with a best-corrected visual acuity (BCVA) of 20/100 or better in the better-seeing eye (n=10) reported similar functional impacts to those with a BCVA of worse than 20/100 in their better-seeing eye (n=5).ConclusionThis study helps address gaps in patient-focused research into GA, which negatively impacts the day-to-day functioning of patients. Larger qualitative and quantitative studies are needed to quantify patient experiences and assess the correlation between BCVA score and impact of GA.