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Combining online and in-person methods to evaluate the content validity of PROMIS fatigue short forms in rheumatoid arthritis

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Bartlett SJ1,2, Gutierrez AK3,4, Butanis A3, Bykerk VP5, Curtis JR6, Ginsberg S7, Leong AL8, Lyddiatt A9, Nowell WB7, Orbai AM3, Smith KC10, Bingham CO 3rd3. Qual Life Res. 2018 May 24. doi: 10.1007/s11136-018-1880-x. [Epub ahead of print]

Abstract

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1 Center for Health Outcomes Research, McGill University, 5252 de Maisonneuve West, #3D-57, Montreal, QC, H4A 3S5, Canada. Susan.bartlett@mcgill.ca.

2 Division of Rheumatology, Johns Hopkins School of Medicine, Mason F Lord Tower, 5200 Eastern Avenue, Rm 404, Baltimore, MD, 21224, USA. Susan.bartlett@mcgill.ca.

3 Division of Rheumatology, Johns Hopkins School of Medicine, Mason F Lord Tower, 5200 Eastern Avenue, Rm 404, Baltimore, MD, 21224, USA.

4 Ateneo School of Medicine and Public Health, Pasig City, Philippines.

5 Hospital for Special Surgery, Weill Cornell Medical College, 525 East 71st St, 7th floor, New York, NY, 10021, USA.

6 Division of Rheumatology, University of Alabama at Birmingham, Birmingham, AL, USA.

7 Global Healthy Living Foundation, Upper Nyack, NY, USA.

8 Healthy Motivation, Santa Barbara, CA, USA.

9 Patient Partners, London, ON, Canada.

10 Johns Hopkins Bloomberg School of Public Health Center for Qualitative Studies in Health and Medicine, Baltimore, MD, USA.

Abstract

PURPOSE: Fatigue is frequent and often severe and disabling in RA, and there is no consensus on how to measure it. We used online surveys and in-person interviews to evaluate PROMIS Fatigue 7a and 8a short forms (SFs) in people with RA.

METHODS: We recruited people with RA from an online patient community (n = 200) and three academic medical centers (n = 84) in the US. Participants completed both SFs then rated the comprehensiveness and comprehensibility of the items to their fatigue experience. Cognitive debriefing of items was conducted in a subset of 32 clinic patients. Descriptive statistics were calculated, and associations were evaluated using Pearson and Spearman correlation coefficients.

RESULTS: Mean SF scores were similar (p ≥ .61) among clinic patients reflecting mild fatigue (i.e., 54.5-55.9), but were significantly higher (p < .001) in online participants. SF Fatigue scores correlated highly (r ≥ 0.82; p < .000) and moderately with patient assessments of disease activity (r ≥ 0.62; p = .000). Most (70-92%) reported that the items "completely" or "mostly" reflected their experience. Almost all (≥ 94%) could distinguish general fatigue from RA fatigue. Most (≥ 85%) rated individual items questions as "somewhat" or "very relevant" to their fatigue experience, averaged their fatigue over the past 7 days (58%), and rated fatigue impact versus severity (72 vs. 19%). 99% rated fatigue as an important symptom they considered when deciding how well their current treatment was controlling their RA.

CONCLUSIONS: Results suggest that items in the single-score PROMIS Fatigue SFs demonstrate content validity and can adequately capture the wide range of fatigue experiences of people with RA.