Content generation for patient-reported outcome measures for retinal degeneration therapeutic trials.
Content generation for patient-reported outcome measures for retinal degeneration therapeutic trials.
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DOI：
10.1080/13816810.2020.1776337
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发表时间：
2020-08
影响因子：
1.2
通讯作者：
Jayasundera KT
中科院分区：
文献类型：
--
作者：
Lacy GD;Abalem MF;Popova LT;Santos EP;Yu G;Rakine HY;Rosenthal JM;Ehrlich JR;Musch DC;Jayasundera KT
生成患者报告结果 (PRO) 测量的内容，以用于未来遗传性视网膜变性的临床试验。密歇根大学凯洛格眼科中心招募了临床诊断为具有不同表型的遗传性视网膜变性的患者进行访谈。首先，进行了深入访谈，广泛征求患者与视功能相关的经验。编码人员使用 Atlas.ti 软件（版本 8.1.3 (522)）对这些访谈的笔录进行定性分析，以起草调查问卷项目。接下来，根据认知访谈中的参与者反馈和试点调查管理（试点访谈）中的管理员反馈对调查问卷进行测试和完善。在三个研究阶段中，共有 55 名临床诊断为遗传性视网膜变性的参与者接受了采访：深度访谈 (n=26)、认知访谈 (n=16) 和试点访谈 (n=13)。分析编码项目的出现频率和相关主题，然后将其组织到公共领域。在每个领域内，起草 PRO 项目是为了解决患者经历的功能限制或适应。 PRO 测量的项目已经起草并评估了目标遗传性视网膜变性患者群体的可解释性。这些项目的内容有效性是通过深度访谈、认知访谈和试点访谈的过程确定的。
Generate content for a patient-reported outcome (PRO) measure for use in future clinical trials for inherited retinal degenerations. Patients at the University of Michigan Kellogg Eye Center with a clinical diagnosis of inherited retinal degeneration with varying phenotypes were recruited for interviews. First, in-depth interviews were performed to solicit a wide range of patient experiences pertaining to visual function. Coders qualitatively analyzed the transcripts from these interviews using Atlas.ti software (Version 8.1.3 (522)) to draft questionnaire items. Next, the questionnaire was tested and refined based on participant feedback in cognitive interviews and administrator feedback in pilot survey administration (pilot interviews). A total of 55 participants with a clinical diagnosis of inherited retinal degeneration were interviewed throughout the three study phases: in-depth interviews (n=26), cognitive interviews (n=16), and pilot interviews (n=13). Coded items were analyzed for frequency of occurrence and related themes, then organized into common domains. Within each domain, PRO items were drafted to address the functional limitations or adaptations experienced by patients. Items for a PRO measure have been drafted and evaluated for interpretability in the target inherited retinal degeneration patient population. Content validity for the items was established through a process of in-depth interviews, cognitive interviews, and pilot interviews.
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DOI：
10.1097/opx.0b013e3182348d0b
发表时间：
2011-12
期刊：
Optometry and vision science : official publication of the American Academy of Optometry
影响因子：
--
作者：
Bittner AK;Ibrahim MA;Haythornthwaite JA;Diener-West M;Dagnelie G
通讯作者：
Dagnelie G
影响因子：
1.4
作者：
Senthil, Mallika Prem;Khadka, Jyoti;Pesudovs, Konrad
通讯作者：
Pesudovs, Konrad
影响因子：
4.5
作者：
Patrick, Donald L.;Burke, Laurie B.;Ring, Lena
通讯作者：
Ring, Lena
影响因子：
5.4
作者：
Layes, Audrey;Asada, Yukiko;Kepart, George
通讯作者：
Kepart, George
影响因子：
3.5
作者：
Groot, W
通讯作者：
Groot, W