Palimaru Alina Ionela, Cunningham William E, Dillistone Marcus, Vargas-Bustamante Arturo, Liu Honghu, Hays Ron D
a Department of Health Policy and Management , UCLA Fielding School of Public Health , Los Angeles , California , USA.
b Division of General Internal Medicine & Health Services Research , Department of Medicine, Geffen School of Medicine at UCLA , Los Angeles , California , USA.
J Spinal Cord Med. 2019 May;42(3):298-309. doi: 10.1080/10790268.2018.1474691. Epub 2018 May 23.
To describe preferences for survey instruments on health-related quality of life (HRQOL) and subjective well-being (SWB) among adults with spinal cord injury (SCI), and compare perspectives on the instruments between the United States and the United Kingdom.
We conducted 20 in-depth interviews.
Participants were interviewed in their homes, some in person and some via Skype.
A convenience sample of 20 adults with SCI (10 in the US and 10 in the UK) were recruited via print and on-line advertisements.
Not applicable.
Interviewees reviewed six instruments and rated how important it was for their medical providers to know answers to each survey. Two coders analyzed verbatim transcriptions independently using an inductive approach. Keyword-in-context (KWIC) analysis identified the most frequently used words by interviewees to discuss the merits of each instrument.
Participants in both samples identified the Fatigue Severity Scale (FSS) as "vital" that their medical providers know about it. This was followed by the Spinal Cord Injury Independence Measure III, and a stand-alone Eudaimonic Well-Being question. The KWIC analysis showed that the most distinctive words used to discuss FSS were "fatigue" and "pain."
Understanding what HRQOL and SWB measures are valued by adults living with SCI can lead to selection of informative instruments, which could help clinicians to complement and tailor established care and rehabilitation protocols for individual needs. Participants identified fatigue as a significant issue, and the FSS as a vitally important instrument to share with medical providers.
描述脊髓损伤（SCI）成人对健康相关生活质量（HRQOL）和主观幸福感（SWB）调查工具的偏好，并比较美国和英国对这些工具的看法。
我们进行了20次深入访谈。
参与者在其家中接受访谈，一些是面对面访谈，一些是通过Skype访谈。
通过印刷品和在线广告招募了20名SCI成人的便利样本（美国10名，英国10名）。
不适用。
受访者查看了六种工具，并对医疗服务提供者了解每项调查答案的重要性进行了评分。两名编码员采用归纳法独立分析逐字记录。上下文关键词（KWIC）分析确定了受访者讨论每种工具优点时最常用的词。
两个样本中的参与者都认为疲劳严重程度量表（FSS）对医疗服务提供者来说“至关重要”。其次是脊髓损伤独立测量III和一个单独的幸福安康问题。KWIC分析表明，用于讨论FSS的最具特色的词是“疲劳”和“疼痛”。
了解SCI成人重视哪些HRQOL和SWB测量方法有助于选择有参考价值的工具，这可以帮助临床医生根据个体需求补充和调整既定的护理和康复方案。参与者认为疲劳是一个重要问题，FSS是与医疗服务提供者分享的至关重要的工具。
