Perceptions of Patients, Caregivers, and Healthcare Providers of Idiopathic Inflammatory Myopathies: An International OMERACT Study.
DELPHI
MYOSITIS
OMERACT
OUTCOME ASSESSMENT
PATIENT-REPORTED OUTCOMES
Journal
The Journal of rheumatology
ISSN: 0315-162X
Titre abrégé: J Rheumatol
Pays: Canada
ID NLM: 7501984
Informations de publication
Date de publication:
01 2019
01 2019
Historique:
accepted:
28
06
2018
pubmed:
17
9
2018
medline:
17
6
2020
entrez:
17
9
2018
Statut:
ppublish
Résumé
Patient-reported outcome measures (PROM) that incorporate the patient perspective have not been well established in idiopathic inflammatory myopathies (IIM). As part of our goal to develop IIM-specific PROM, the Outcome Measures in Rheumatology (OMERACT) Myositis special interest group sought to determine which aspects of disease and its effects are important to patients and healthcare providers (HCP). Based on a prior qualitative content analysis of focus groups, an initial list of 24 candidate domains was constructed. We subsequently conducted an international survey to identify the importance of each of the 24 domains to be assessed in clinical research. Patients with IIM, their caregivers, and HCP treating IIM completed the survey. In this survey, a total of 638 respondents completed the survey, consisting of 510 patients, 101 HCP, and 27 caregivers from 48 countries. Overall, patients were more likely to rank "fatigue," "cognitive impact," and "difficulty sleeping" higher compared with HCP, who ranked "joint symptoms," "lung symptoms," and "dysphagia" higher. Both patients and providers rated muscle symptoms as their top domain. In general, patients from different countries were in agreement on which domains were most important. One notable exception was that patients from Sweden and the Netherlands ranked lung symptoms significantly higher compared to other countries including the United States and Australia (mean weighted rankings of 2.86 and 2.04 vs 0.76 and 0.80, respectively; p < 0.0001). Substantial differences exist in how IIM is perceived by patients compared to HCP, with different domains prioritized. In contrast, patients' ratings across the world were largely similar.
Identifiants
pubmed: 30219767
pii: jrheum.180353
doi: 10.3899/jrheum.180353
pmc: PMC7497902
mid: NIHMS1627472
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
106-111Subventions
Organisme : NIAMS NIH HHS
ID : P30 AR053503
Pays : United States
Organisme : NIAMS NIH HHS
ID : P30 AR070254
Pays : United States
Commentaires et corrections
Type : CommentIn
Références
Clin Rheumatol. 2018 May;37(5):1171-1181
pubmed: 29372349
J Rheumatol. 2011 Aug;38(8):1711-5
pubmed: 21807790
J Rheumatol. 2011 Aug;38(8):1739-44
pubmed: 21807795
J Rheumatol. 2001 Oct;28(10):2230-7
pubmed: 11669162
J Clin Epidemiol. 1993 Dec;46(12):1417-32
pubmed: 8263569
Value Health. 2011 Dec;14(8):967-77
pubmed: 22152165
Ann Rheum Dis. 2012 Nov;71(11):1855-60
pubmed: 22772326
Nurse Educ Today. 2004 Feb;24(2):105-12
pubmed: 14769454
Rheumatology (Oxford). 2005 Jan;44(1):83-8
pubmed: 15381789
Lung. 2016 Oct;194(5):733-7
pubmed: 27166633
Ann Rheum Dis. 2018 Jan;77(1):30-39
pubmed: 28855174
J Am Acad Dermatol. 2016 Feb;74(2):377-9
pubmed: 26775780
J Rheumatol. 2014 May;41(5):1011-5
pubmed: 24584919
J Rheumatol. 2015 Dec;42(12):2492-5
pubmed: 25934817
Lancet. 2003 Sep 20;362(9388):971-82
pubmed: 14511932
Trials. 2007 Nov 26;8:38
pubmed: 18039364
Rheumatology (Oxford). 2011 Mar;50(3):578-85
pubmed: 21097879
Value Health. 2011 Dec;14(8):978-88
pubmed: 22152166
J Rheumatol. 2014 Mar;41(3):581-92
pubmed: 24429182