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Combining online and in-person methods to evaluate the content validity of PROMIS fatigue short forms in rheumatoid arthritis.
Bartlett, S J; Gutierrez, A K; Butanis, A; Bykerk, V P; Curtis, J R; Ginsberg, S; Leong, A L; Lyddiatt, A; Nowell, W B; Orbai, A M; Smith, K C; Bingham, C O.
Affiliation
  • Bartlett SJ; Center for Health Outcomes Research, McGill University, 5252 de Maisonneuve West, #3D-57, Montreal, QC, H4A 3S5, Canada. Susan.bartlett@mcgill.ca.
  • Gutierrez AK; 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.
  • Butanis A; Division of Rheumatology, Johns Hopkins School of Medicine, Mason F Lord Tower, 5200 Eastern Avenue, Rm 404, Baltimore, MD, 21224, USA.
  • Bykerk VP; Ateneo School of Medicine and Public Health, Pasig City, Philippines.
  • Curtis JR; Division of Rheumatology, Johns Hopkins School of Medicine, Mason F Lord Tower, 5200 Eastern Avenue, Rm 404, Baltimore, MD, 21224, USA.
  • Ginsberg S; Hospital for Special Surgery, Weill Cornell Medical College, 525 East 71st St, 7th floor, New York, NY, 10021, USA.
  • Leong AL; Division of Rheumatology, University of Alabama at Birmingham, Birmingham, AL, USA.
  • Lyddiatt A; Global Healthy Living Foundation, Upper Nyack, NY, USA.
  • Nowell WB; Healthy Motivation, Santa Barbara, CA, USA.
  • Orbai AM; Patient Partners, London, ON, Canada.
  • Smith KC; Global Healthy Living Foundation, Upper Nyack, NY, USA.
  • Bingham CO; Division of Rheumatology, Johns Hopkins School of Medicine, Mason F Lord Tower, 5200 Eastern Avenue, Rm 404, Baltimore, MD, 21224, USA.
Qual Life Res ; 27(9): 2443-2451, 2018 Sep.
Article in En | MEDLINE | ID: mdl-29797175
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.
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Arthritis, Rheumatoid / Education, Distance / Fatigue / Interview, Psychological Aspects: Patient_preference Limits: Female / Humans / Male / Middle aged Language: En Journal: Qual Life Res Journal subject: REABILITACAO / TERAPEUTICA Year: 2018 Document type: Article Affiliation country: Country of publication:

Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Arthritis, Rheumatoid / Education, Distance / Fatigue / Interview, Psychological Aspects: Patient_preference Limits: Female / Humans / Male / Middle aged Language: En Journal: Qual Life Res Journal subject: REABILITACAO / TERAPEUTICA Year: 2018 Document type: Article Affiliation country: Country of publication: