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
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 wi...
Saved in:
| Main Authors: | , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMJ Publishing Group
2023-12-01
|
| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/13/12/e071586.full |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1849723011710582784 |
|---|---|
| author | Lene Dreyer Lars Erik Kristensen Mark Andrew Ainsworth Tanja Schjødt Jørgensen Simon Francis Thomsen Katrine Risager Christensen Marie Skougaard Zara R Stisen Rebekka Lund Hansen Mette Mogensen |
| author_facet | Lene Dreyer Lars Erik Kristensen Mark Andrew Ainsworth Tanja Schjødt Jørgensen Simon Francis Thomsen Katrine Risager Christensen Marie Skougaard Zara R Stisen Rebekka Lund Hansen Mette Mogensen |
| author_sort | Lene Dreyer |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-877f7b18b4904b2ea1793f09a05ad214 |
| institution | DOAJ |
| issn | 2044-6055 |
| language | English |
| publishDate | 2023-12-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-877f7b18b4904b2ea1793f09a05ad2142025-08-20T03:11:10ZengBMJ Publishing GroupBMJ Open2044-60552023-12-01131210.1136/bmjopen-2023-071586Exploring 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 studyLene Dreyer0Lars Erik Kristensen1Mark Andrew Ainsworth2Tanja Schjødt Jørgensen3Simon Francis Thomsen4Katrine Risager Christensen5Marie Skougaard6Zara R Stisen7Rebekka Lund Hansen8Mette Mogensen9Department of Rheumatology, Aalborg University Hospital, Aalborg, DenmarkThe Parker Institute, Bispebjerg and Frederiksberg Hospital, University of Copenhagen, Frederiksberg, DenmarkDepartment of Gastroenterology and Hepatology, Odense University Hospital, Odense, DenmarkOn behalf of the DANBIO registry, Copenhagen, DenmarkDepartment of Dermatology, Bispebjerg and Frederiksberg Hospital, University of Copenhagen, Copenhagen, DenmarkDepartment of Gastroenterology, Herlev and Gentofte Hospital, Herlev, DenmarkThe Parker Institute, Bispebjerg and Frederiksberg Hospital, University of Copenhagen, Frederiksberg, Denmarkmedical doctorThe Parker Institute, Bispebjerg and Frederiksberg Hospital, University of Copenhagen, Frederiksberg, Denmark13Bispebjerg Hosp, Copenhagen, DenmarkObjectives 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.https://bmjopen.bmj.com/content/13/12/e071586.full |
| spellingShingle | Lene Dreyer Lars Erik Kristensen Mark Andrew Ainsworth Tanja Schjødt Jørgensen Simon Francis Thomsen Katrine Risager Christensen Marie Skougaard Zara R Stisen Rebekka Lund Hansen Mette Mogensen 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 |
| title | 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | 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 |
| url | https://bmjopen.bmj.com/content/13/12/e071586.full |
| work_keys_str_mv | AT lenedreyer exploringdiseaserelatedandtreatmentrelatedissuesandconcernsexperiencedbyadultswithspondyloarthritisinflammatoryboweldiseaseandpsoriasistoidentifyunmetneedsaqualitativeclinicalconceptmappingstudy AT larserikkristensen exploringdiseaserelatedandtreatmentrelatedissuesandconcernsexperiencedbyadultswithspondyloarthritisinflammatoryboweldiseaseandpsoriasistoidentifyunmetneedsaqualitativeclinicalconceptmappingstudy AT markandrewainsworth exploringdiseaserelatedandtreatmentrelatedissuesandconcernsexperiencedbyadultswithspondyloarthritisinflammatoryboweldiseaseandpsoriasistoidentifyunmetneedsaqualitativeclinicalconceptmappingstudy AT tanjaschjødtjørgensen exploringdiseaserelatedandtreatmentrelatedissuesandconcernsexperiencedbyadultswithspondyloarthritisinflammatoryboweldiseaseandpsoriasistoidentifyunmetneedsaqualitativeclinicalconceptmappingstudy AT simonfrancisthomsen exploringdiseaserelatedandtreatmentrelatedissuesandconcernsexperiencedbyadultswithspondyloarthritisinflammatoryboweldiseaseandpsoriasistoidentifyunmetneedsaqualitativeclinicalconceptmappingstudy AT katrinerisagerchristensen exploringdiseaserelatedandtreatmentrelatedissuesandconcernsexperiencedbyadultswithspondyloarthritisinflammatoryboweldiseaseandpsoriasistoidentifyunmetneedsaqualitativeclinicalconceptmappingstudy AT marieskougaard exploringdiseaserelatedandtreatmentrelatedissuesandconcernsexperiencedbyadultswithspondyloarthritisinflammatoryboweldiseaseandpsoriasistoidentifyunmetneedsaqualitativeclinicalconceptmappingstudy AT zararstisen exploringdiseaserelatedandtreatmentrelatedissuesandconcernsexperiencedbyadultswithspondyloarthritisinflammatoryboweldiseaseandpsoriasistoidentifyunmetneedsaqualitativeclinicalconceptmappingstudy AT rebekkalundhansen exploringdiseaserelatedandtreatmentrelatedissuesandconcernsexperiencedbyadultswithspondyloarthritisinflammatoryboweldiseaseandpsoriasistoidentifyunmetneedsaqualitativeclinicalconceptmappingstudy AT mettemogensen exploringdiseaserelatedandtreatmentrelatedissuesandconcernsexperiencedbyadultswithspondyloarthritisinflammatoryboweldiseaseandpsoriasistoidentifyunmetneedsaqualitativeclinicalconceptmappingstudy |