McGovern Medical School, The University of Texas Health Science Center at Houston, Houston, TX, USA.
Department of Internal Medicine, McGovern Medical School, The University of Texas Health Science Center at Houston, 6431 Fannin, MSB 1.150, Houston, TX, 77030, USA.
Qual Life Res. 2020 Nov;29(11):3155-3166. doi: 10.1007/s11136-020-02552-z. Epub 2020 Jul 1.
The ankylosing spondylitis quality of life (ASQoL) instrument is widely used to assess health-related quality of life in patients with ankylosing spondylitis (AS). We assessed the relevance of the ASQoL items in patients with non-radiographic axial spondyloarthritis (nr-axSpA), a distinct subgroup within the axSpA disease spectrum.
This observational, cross-sectional, qualitative interview study recruited patients from clinic settings. Interviews from patients with axSpA who participated in a prior qualitative study were also used. Patients initially underwent a concept elicitation interview using open-ended questions to evaluate relevance of the concepts measured by the ASQoL. They then completed the ASQoL and underwent a cognitive interview to assess their understanding of the items, instructions and response options. Transcripts from patients who participated in the previous qualitative study (who did not complete the ASQoL or undergo cognitive interview) were evaluated to identify expressions of the concepts in the ASQoL.
A total of 18 patients with nr-axSpA participated. The concept elicitation interview findings supported the relevance of the ASQoL items. Cognitive interviews determined that the ASQoL was easily understood; the 13 new patients chose a response for each item that matched their experience with nr-axSpA. Transcripts for the five previously interviewed patients confirmed the concepts presented in the ASQoL items were relevant and important to their experience of living with nr-axSpA.
Our results represent an important first step in confirming the relevance of the concepts in the ASQoL to patients with nr-axSpA, supporting quantitative assessment of ASQoL validity in this population.
强直性脊柱炎生活质量(ASQoL)量表广泛用于评估强直性脊柱炎(AS)患者的健康相关生活质量。我们评估了非放射学中轴型脊柱关节炎(nr-axSpA)患者中 ASQoL 项目的相关性,nr-axSpA 是 axSpA 疾病谱中的一个独特亚组。
这是一项观察性、横断面、定性访谈研究,从诊所招募了患者。还使用了先前参与定性研究的 axSpA 患者的访谈。患者最初接受了概念启发访谈,使用开放式问题评估 ASQoL 测量的概念的相关性。然后,他们完成了 ASQoL 并进行了认知访谈,以评估他们对项目、说明和响应选项的理解。评估了先前参与定性研究但未完成 ASQoL 或认知访谈的患者的转录本,以确定 ASQoL 中概念的表达。
共有 18 名 nr-axSpA 患者参与。概念启发访谈结果支持 ASQoL 项目的相关性。认知访谈确定 ASQoL 易于理解;13 名新患者为每个项目选择了与 nr-axSpA 经历相匹配的响应。对之前访谈的五名患者的转录本证实了 ASQoL 项目中提出的概念与他们患有 nr-axSpA 的生活经历相关且重要。
我们的结果代表了在 nr-axSpA 患者中确认 ASQoL 概念相关性的重要第一步,支持在该人群中对 ASQoL 有效性进行定量评估。