Content validity of the ASQoL for use in a non-radiographic axial spondyloarthritis population: a qualitative study

Abstract

Purpose 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. Methods 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. Results 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. Conclusions 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.

Exploring the emotional impact of axial Spondyloarthritis: a systematic review and thematic synthesis of qualitative studies and a review of social media

“…Study populations included participants with AS ( n = 1220) [ 24 – 45 ], axial SpA ( n = 76) [ 46 – 49 ] and n-r axial SpA ( n = 18) [ 50 ]. Nearly three quarters of participants ( n = 948, 72%) were men and most had established disease.…”

“… Qualitative interviews N= 10 with axSpA (Men 70%) Age: 40.2 years (mean) Symptom duration: 10.1 years (mean) Interpretive phenomenological analysis To explore the journey to diagnosis of people with axSpA Berenbaum (2014) [ 47 ], France, Hospital and community-based rheumatology services. Qualitative interviews N=23/25 with axSpA (Men 48%) d Age: ≥35 years (28%); 36 to 45 years (28%); 46 to 55 years (24%); >55 years (20%) Disease duration: <2 years (24%), 2-5 years (24%), 6-10 years (24%), > 10 years (28%) Thematic analysis To explore beliefs and fears about RA and SpA and about treatment of these diseases Raybone (2019) [ 48 ], UK, axSpA-specific charity Qualitative interviews N=9 with axSpA (Male 33%) Age: 42.4 years (mean) Disease duration: NS Thematic analysis To explore the impact of AS on couple relationships Kwan (2019) [ 49 ], Singapore, Hospital registry Qualitative focus groups N=34 with axSpA (Men 59%) Age: 41 years (median) Disease duration: 11 years (median) Thematic analysis To explore Quality-of-Life domains Hwang (2020) [ 50 ], United States, Two clinic sites and a prior qualitative study Qualitative interviews N=18 with nr-axSpA (Men 33%) Age: 46 years (Median) Disease duration: range 3 months -15 years Content analysis To explore the relevance of concepts measured by the Ankylosing Spondylitis Quality of Life (ASQoL) instrument Abbreviations : AS, Ankylosing spondylitis; NASS, National Axial Spondyloarthritis Society; SpA, Spondyloarthritis; RA, Rheumatoid Arthritis; NS, not specified; axSpA, axial Spondyloarthritis; nr-axSpA, non-radiographic axial Spondyloarthritis a Participated in focus group b Participated in qualitative interviews c Participated in questionnaire with open-ended questions d The number of participants with axial SpA was not specified e The total number of participants with AS that provided qualitative data was not specified …”

Reliability and validity of the PROMIS-29 health profile in Ankylosing Spondylitis patients: A cross-sectional study

“…[2] More recent AS-specific health-related quality of life (HRQoL) instruments are now available that better capture the full impact of disease; however, they are yet to be widely adopted in clinical care. [3][4][5][6] Generic, as opposed to legacy, disease-specific patientreported outcome measures (PROs), represent an opportunity to compare disease burden and treatment impact across different chronic conditions using a common metric. The National Institutes of Health (NIH)-funded Patient-Reported Outcomes Measurement Information System (PROMIS) incorporates both adult and pediatric PROs in physical, mental, and social health domains across a wide variety of chronic diseases and general population (GP) controls.…”

“…[2] More recent AS-specific health-related quality of life (HRQoL) instruments are now available that better capture the full impact of disease; however, they are yet to be widely adopted in clinical care. [3–6]…”

Validation of the Ankylosing Spondylitis Quality of Life assessment tool in patients with non-radiographic axial spondyloarthritis

“…Prior to this, patient interviews were conducted, which confirmed the concepts measured by the ASQoL were relevant to patients with nr-axSpA and provided the first step in assessing the validity of the ASQoL in this patient population [ 20 ].…”