Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers

Overview

Journal J Clin Med

Specialty General Medicine

Date 2023 Feb 25

PMID 36835895

Authors

Quentin Kirren

Camille Daste

Frantz Foissac

Hendy Abdoul

Sophie Alami

Marie-Eve Carrier

Linda Kwakkenbos

Marie-Martine Lefevre-Colau

Francois Rannou

Agathe Papelard

Alexandra Roren

Brett D Thombs

Luc Mouthon

Christelle Nguyen

Affiliations

Soon will be listed here.

Abstract

Differences in disability perception between patients and care providers may impact outcomes. We aimed to explore differences in disability perception between patients and care providers in systemic sclerosis (SSc). We conducted a cross-sectional internet-based mirror survey. SSc patients participating in the online SPIN Cohort and care providers affiliated with 15 scientific societies were surveyed using the Cochin Scleroderma International Classification of Functioning, Disability and Health (ICF)-65 questionnaire, including 65 items (from 0 to 10), representing 9 domains of disability. Mean differences between patients and care providers were calculated. Care providers' characteristics associated with a mean difference ≥ 2 of 10 points were assessed in multivariate analysis. Answers were analyzed for 109 patients and 105 care providers. The mean age of patients was 55.9 (14.7) years and the disease duration was 10.1 (7.5) years. For all domains of the ICF-65, care providers' rates were higher than those of patients. The mean difference was 2.4 (1.0) of 10 points. Care providers' characteristics associated with this difference were organ-based specialty (OR = 7.0 [2.3-21.2]), younger age (OR = 2.7 [1.0-7.1]) and following patients with disease duration ≥5 years (OR = 3.0 [1.1-8.7]). We found systematic differences in disability perception between patients and care providers in SSc.

References

Rannou F, Poiraudeau S, Berezne A, Baubet T, Le-Guern V, Cabane J . Assessing disability and quality of life in systemic sclerosis: construct validities of the Cochin Hand Function Scale, Health Assessment Questionnaire (HAQ), Systemic Sclerosis HAQ, and Medical Outcomes Study 36-Item Short Form Health Survey. Arthritis Rheum. 2007; 57(1):94-102. DOI: 10.1002/art.22468. View

Wang C, Fong W, Kwan Y, Phang J, Lui N, Leung Y . A cross-sectional study on factors associated with patient-physician discordance in global assessment of patients with axial spondyloarthritis: an Asian perspective. Int J Rheum Dis. 2018; 21(7):1436-1442. DOI: 10.1111/1756-185X.13299. View

Papelard A, Daste C, Alami S, Sanchez K, Roren A, Segretin F . Construction of an ICF core set and ICF-based questionnaire assessing activities and participation in patients with systemic sclerosis. Rheumatology (Oxford). 2019; 58(12):2260-2272. DOI: 10.1093/rheumatology/kez209. View

Nguyen C, Ranque B, Baubet T, Berezne A, Mestre-Stanislas C, Rannou F . Clinical, functional and health-related quality of life correlates of clinically significant symptoms of anxiety and depression in patients with systemic sclerosis: a cross-sectional survey. PLoS One. 2014; 9(2):e90484. PMC: 3938731. DOI: 10.1371/journal.pone.0090484. View

Nguyen C, Mouthon L, Mestre-Stanislas C, Rannou F, Berezne A, Sanchez K . Sensitivity to change in systemic sclerosis of the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR): shift in patient priorities over time. J Rheumatol. 2010; 37(2):359-64. DOI: 10.3899/jrheum.090632. View

Hewlett S, Smith A, Kirwan J . Values for function in rheumatoid arthritis: patients, professionals, and public. Ann Rheum Dis. 2001; 60(10):928-33. PMC: 1753375. DOI: 10.1136/ard.60.10.928. View

Jackson C, Clatworthy J, Robinson A, Horne R . Factors associated with non-adherence to oral medication for inflammatory bowel disease: a systematic review. Am J Gastroenterol. 2009; 105(3):525-39. DOI: 10.1038/ajg.2009.685. View

Nguyen C, Berezne A, Mestre-Stanislas C, Lefevre-Colau M, Rannou F, Guillevin L . Changes over Time and Responsiveness of the Cochin Hand Function Scale and Mouth Handicap in Systemic Sclerosis Scale in Patients with Systemic Sclerosis: A Prospective Observational Study. Am J Phys Med Rehabil. 2016; 95(12):e189-e197. DOI: 10.1097/PHM.0000000000000611. View

Berezne A, Nguyen C, Mouthon L . [Professional consequences of systemic sclerosis]. Presse Med. 2013; 42(9 Pt 1):1159-70. DOI: 10.1016/j.lpm.2013.04.011. View

10.

Egholm C, Krogh N, Pincus T, Dreyer L, Ellingsen T, Glintborg B . Discordance of Global Assessments by Patient and Physician Is Higher in Female than in Male Patients Regardless of the Physician's Sex: Data on Patients with Rheumatoid Arthritis, Axial Spondyloarthritis, and Psoriatic Arthritis from the DANBIO.... J Rheumatol. 2015; 42(10):1781-5. DOI: 10.3899/jrheum.150007. View

11.

Berezne A, Seror R, Morell-Dubois S, de Menthon M, Fois E, Dzeing-Ella A . Impact of systemic sclerosis on occupational and professional activity with attention to patients with digital ulcers. Arthritis Care Res (Hoboken). 2010; 63(2):277-85. DOI: 10.1002/acr.20342. View

12.

Nguyen C, Berezne A, Baubet T, Mestre-Stanislas C, Rannou F, Papelard A . Association of gender with clinical expression, quality of life, disability, and depression and anxiety in patients with systemic sclerosis. PLoS One. 2011; 6(3):e17551. PMC: 3052319. DOI: 10.1371/journal.pone.0017551. View

13.

Berkanovic E, Hurwicz M, Lachenbruch P . Concordant and discrepant views of patients' physical functioning. Arthritis Care Res. 1995; 8(2):94-101. DOI: 10.1002/art.1790080207. View

14.

Golder V, Ooi J, Antony A, Ko T, Morton S, Kandane-Rathnayake R . Discordance of patient and physician health status concerns in systemic lupus erythematosus. Lupus. 2017; 27(3):501-506. DOI: 10.1177/0961203317722412. View

15.

Arat S, Verschueren P, De Langhe E, Smith V, Vanthuyne M, Diya L . The association of illness perceptions with physical and mental health in systemic sclerosis patients: an exploratory study. Musculoskeletal Care. 2011; 10(1):18-28. DOI: 10.1002/msc.223. View

16.

Mouthon L, Rannou F, Berezne A, Pagnoux C, Guilpain P, Goldwasser F . Patient preference disability questionnaire in systemic sclerosis: a cross-sectional survey. Arthritis Rheum. 2008; 59(7):968-73. DOI: 10.1002/art.23819. View

17.

Daste C, Abdoul H, Foissac F, Papelard A, Alami S, Kwakkenbos L . Development of a new patient-reported outcome measure to assess activities and participation in people with systemic sclerosis: the Cochin 17-item Scleroderma Functional scale. Br J Dermatol. 2020; 183(4):710-718. DOI: 10.1111/bjd.18922. View

18.

Peytrignet S, Manning J, Wragg E, Moore T, Samaranayaka M, Dinsdale G . Changes in disability and their relationship with skin thickening, in diffuse and limited cutaneous systemic sclerosis: a retrospective cohort study. Scand J Rheumatol. 2018; 48(3):230-234. DOI: 10.1080/03009742.2018.1523455. View

19.

Denton C, Khanna D . Systemic sclerosis. Lancet. 2017; 390(10103):1685-1699. DOI: 10.1016/S0140-6736(17)30933-9. View

20.

Kwakkenbos L, Jewett L, Baron M, Bartlett S, Furst D, Gottesman K . The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context. BMJ Open. 2013; 3(8). PMC: 3740254. DOI: 10.1136/bmjopen-2013-003563. View