Measuring the impact of steroid therapy on health-related quality of life in patients with rheumatic diseases: international development of a glucocorticoid treatment–specific patient-reported outcome measure-Reference-Cited by-同舟云学术

Measuring the impact of steroid therapy on health-related quality of life in patients with rheumatic diseases: international development of a glucocorticoid treatment–specific patient-reported outcome measure

Published:2023-02-25 Issue:11 Volume:62 Page:3565-3575
ISSN:1462-0324
Container-title:Rheumatology
language:en
Short-container-title:

Author:

Bridgewater Susan¹²^ORCID,Shepherd Michael A¹²^ORCID,Dawson Jill³^ORCID,Richards Pamela²,Silverthorne Christine¹²^ORCID,Ndosi Mwidimi¹²^ORCID,Almeida Celia¹²,Black Rachel J⁴⁵⁶^ORCID,Cheah Jonathan T L⁷^ORCID,Dures Emma¹²^ORCID,Ghosh Nilasha⁸^ORCID,Hoon Elizabeth A⁹¹⁰,Lyne Suellen⁴⁶^ORCID,Navarro-Millan Iris⁷¹¹^ORCID,Pearce-Fisher Diyu⁸^ORCID,Ruediger Carlee⁶,Tieu Joanna⁶¹²^ORCID,Yip Kevin⁸^ORCID,Mackie Sarah L¹³¹⁴^ORCID,Goodman Susan⁸^ORCID,Hill Catherine⁴⁵⁶^ORCID,Robson Joanna C¹²^ORCID

Affiliation:

1. Faculty of Health and Applied Sciences, School of Health and Social Wellbeing, University of the West of England—UWE Bristol , Bristol, UK

2. Academic Rheumatology Department, University Hospitals Bristol and Weston NHS Foundation Trust , Bristol, UK

3. Department of Population Health (HSRU), University of Oxford , Oxford, UK

4. Discipline of Medicine, The University of Adelaide , Adelaide, Australia

5. Rheumatology Department, Royal Adelaide Hospital , Adelaide, Australia

6. Department of Rheumatology, The Queen Elizabeth Hospital , Adelaide, Australia

7. Department of Medicine, Division of Rheumatology, University of Massachusetts Medical School , Worcester, MA, USA

8. Division of Rheumatology, Hospital for Special Surgery, Weill Cornell Medicine , New York, NY, USA

9. Discipline of General Practice, The University of Adelaide , Adelaide, Australia

10. School of Public Health, The University of Adelaide , Adelaide, Australia

11. Division of General Internal Medicine, Weill Cornell Medicine , New York, NY, USA

12. Rheumatology Unit, Lyell McEwin Hospital , Adelaide, Australia

13. Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds , Leeds, UK

14. NIHR Leeds Biomedical Research Centre, Leeds Teaching Hospitals NHS Trust , Leeds, UK

Abstract

Abstract Objectives Glucocorticoids (GCs) (‘steroids’) are used to treat rheumatic diseases but adverse effects are common. We aimed to explore the impact of GC therapy on health-related quality of life (HRQoL), to inform the development of a treatment-specific patient-reported outcome measure (PROM) for use in clinical trials and practice. Methods Semi-structured qualitative interviews were conducted with patients from the UK, USA and Australia, treated for a rheumatic condition with GCs in the last 2 years. Purposive sampling was used to select participants with a range of demographic and disease features. An initial conceptual framework informed interview prompts and cues. Interviews elicited GC-related physical and psychological symptoms and salient aspects of HRQoL in relation to GC therapy. Interview data were analysed inductively to develop initial individual themes and domains. Candidate questionnaire items were developed and refined. Results Sixty semi-structured qualitative interviews were conducted (UK n = 34, USA n = 10, Australia n = 16). The mean age was 58 years; 39/60 were female; and 18 rheumatic diseases were represented. Some 126 individual themes were identified and organized into six domains: physical symptoms; psychological symptoms; psychological impact of steroids; impact of steroids on participation; impact of steroids on relationships; and benefits of steroids. Candidate questionnaire items were tested and refined by piloting with patient research partners, iterative rounds of cognitive interviews and linguistic translatability assessment, informing a draft questionnaire. Conclusion We describe an international qualitative study to develop candidate items for a treatment-specific PROM for patients with rheumatic diseases. A future survey will enable the validation of a final version of the PROM.

Funder

Above and Beyond Bristol Hospitals

University Hospitals Bristol NHS Foundation Trust

University of the West of England

Australian Rheumatology Association

Above & Beyond Bristol Hospitals Charity

Oxford University Innovation

Publisher

Oxford University Press (OUP)

Subject

Pharmacology (medical),Rheumatology

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