Exploring disease-related and treatment-related issues and concerns experienced by adults with spondyloarthritis, inflammatory bowel disease and psoriasis to identify unmet needs: a qualitative clinical concept mapping study

Zara R Stisen; Marie Skougaard; Katrine Risager Christensen; Mark Andrew Ainsworth; Rebekka Lund Hansen; Simon Francis Thomsen; Mette Mogensen; Lene Dreyer; Lars Erik Kristensen; Tanja Schjødt Jørgensen

doi:10.1136/bmjopen-2023-071586

Exploring disease-related and treatment-related issues and concerns experienced by adults with spondyloarthritis, inflammatory bowel disease and psoriasis to identify unmet needs: a qualitative clinical concept mapping study

BMJ Open. 2023 Dec 11;13(12):e071586. doi: 10.1136/bmjopen-2023-071586.

Affiliations

¹ The Parker Institute, Bispebjerg and Frederiksberg Hospital, University of Copenhagen, Frederiksberg, Denmark zara.rebecca.stisen.03@regionh.dk.
² The Parker Institute, Bispebjerg and Frederiksberg Hospital, University of Copenhagen, Frederiksberg, Denmark.
³ Department of Clinical Immunology, Aarhus University Hospital, Aarhus, Denmark.
⁴ Department of Gastroenterology, Herlev and Gentofte Hospital, Herlev, Denmark.
⁵ Department of Gastroenterology and Hepatology, Odense University Hospital, Odense, Denmark.
⁶ Department of Dermatology, Bispebjerg and Frederiksberg Hospital, University of Copenhagen, Copenhagen, Denmark.
⁷ Center of Rheumatic Research Aalborg (CERRA), Department of Rheumatology, Aalborg University Hospital, Aalborg University, Aalborg, Denmark.

Abstract

Objectives: Exploring patients' perspectives for significant factors of relevance in living with a chronic disease is important to discover unmet needs and challenges. The primary objective of this study was to explore disease-related and treatment-related issues and concerns experienced by adults with spondyloarthropathies (SpA) and associated diseases. As a secondary objective, we wanted to explore whether these factors were generic or disease dependent.

Design: We used group concept mapping (GCM), a validated qualitative method, to identify disease-related and treatment-related issues and concerns. Participants generated statements in the GCM workshops and organised them into clusters to develop concepts. Furthermore, participants rated each statement for importance from 1: 'not important at all' to 5: 'of great importance'.

Setting: Participants were recruited during routine care at the outpatient clinic at the hospitals in the period from May 2018 to July 2022.

Participants: Eligible participants were adults ≥18 years and diagnosed with axial spondyloarthritis (AxSpA), psoriatic arthritis (PsA), psoriasis (PsO) or inflammatory bowel disease -split into Crohn's disease (CD) and ulcerative colitis (UC).

Results: 52 patients participated in the 11 workshops divided into groups according to their diagnosis. They created a total of 1275 statements that generated 10 AxSpA concepts, 7 PsA concepts, 7 PsO concepts, 10 CD concepts and 11 UC concepts. The highest rated concepts within each disease group were: AxSpA, 'lack of understanding/to be heard and seen by healthcare professionals' (mean rating 4.0); PsA, 'medication (effects and side effects)' (mean rating 3.8); PsO, 'social and psychological problems, the shame' (mean rating 4.0); CD, 'positive attitudes' (mean rating 4.3) and UC; 'take responsibility and control over your life' (mean rating 4.0).

Conclusion: People with SpA and associated diseases largely agree on which concepts describe their disease-related and treatment-related issues and concerns with a few of them being more disease-specific.

Keywords: Inflammatory bowel disease; Psoriasis; QUALITATIVE RESEARCH; Rheumatology.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Arthritis, Psoriatic* / drug therapy
Axial Spondyloarthritis*
Colitis, Ulcerative*
Crohn Disease*
Humans
Inflammatory Bowel Diseases* / therapy
Psoriasis* / therapy
Spondylarthritis* / therapy