TY - JOUR

T1 - Exploring disease-related and treatment-related issues and concerns experienced by adults with spondyloarthritis, inflammatory bowel disease and psoriasis to identify unmet needs

T2 - A qualitative clinical concept mapping study

AU - Stisen, Zara R.

AU - Skougaard, Marie

AU - Christensen, Katrine Risager

AU - Ainsworth, Mark Andrew

AU - Hansen, Rebekka Lund

AU - Thomsen, Simon Francis

AU - Mogensen, Mette

AU - Dreyer, Lene

AU - Kristensen, Lars Erik

AU - Jørgensen, Tanja Schjødt

N1 - Publisher Copyright: © 2023 BMJ Publishing Group. All rights reserved.

PY - 2023

Y1 - 2023

N2 - 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.

AB - 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.

KW - Inflammatory bowel disease

KW - Psoriasis

KW - QUALITATIVE RESEARCH

KW - Rheumatology

U2 - 10.1136/bmjopen-2023-071586

DO - 10.1136/bmjopen-2023-071586

M3 - Journal article

C2 - 38081674

AN - SCOPUS:85179644585

VL - 13

JO - BMJ Open

JF - BMJ Open

SN - 2044-6055

IS - 12

M1 - e071586

ER -