“Mastering a New Life Situation” – Patients’ Preferences of Treatment Outcomes in Early Rheumatoid Arthritis – A Longitudinal Qualitative Study

Abstract

Purpose

To explore patients’ preferred treatment outcomes during their first two years with rheumatoid arthritis (RA).

Patients and Methods

A qualitative, longitudinal, multicenter study with interviews at two time points was performed in Sweden. Individual interviews were conducted at time point 1 with 31 patients with RA, defined as disease duration of ≤1 year and treatment for 3–7 months. Seven focus group interviews and five individual interviews were conducted at time point 2 with 22 patients 12–20 months after treatment initiation. The interviews were analyzed using the Qualitative Analysis Guide of Leuven. A core category with four related concepts emerged.

Results

The core finding of patient-preferred treatment outcomes was “mastering a new life situation”. Patients preferred to experience control of the disease by controlling the symptoms and by experiencing absence of disease. To experience autonomy by regaining former activity level, experiencing independence, and being empowered was another preferred outcome. Patients preferred to regain identity through being able to participate, experience well-being, and regain former self-image. To experience joy in everyday life through vitality and believing in the future was another preferred outcome. Patients’ preferences developed over time from the acute phase of controlling the symptoms and wanting to return to the life they lived prior to diagnosis, to a more preventive way of self-management and empowerment to master the new life situation.

Conclusion

The patients’ preferred treatment outcomes during the first two years with RA were to master their new life situation and changed from a preference to return to a life lived prior disease onset, to a preference of living with quality of life, despite RA. This study increases the understanding of patients’ preferred treatment outcomes in the early disease course and can be a foundation for tailoring interventions to be more person-centered and to improve long-term treatment outcomes.

Keywords:

• focus groups
• interviews
• multicenter
• patient perspective
• rheumatic diseases

Data Sharing Statement

The data supporting the results reported in the manuscript will not be shared as ethical approval for the study requires that the transcribed interviews are kept in locked files, accessible only to the researchers.

Ethical Considerations

The study was carried out in accordance with the ethical principles of the Declaration of Helsinki⁶¹ and approved by the Regional Ethical Review Board in Lund, Sweden (2016/618, 2017/205). Written informed consent was obtained from all participants. Oral and written information about the study, voluntary participation, and the possibility of withdrawing at any time without given a reason or affecting their healthcare and treatment was provided by the first or last author (EL, IL).

Acknowledgments

The authors would like to thank all participants in this study.

Author Contributions

All authors made substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; took part in drafting the article or revising it critically for important intellectual content; gave final approval of the version to be published; and agree to be accountable for all aspects of the work.

Disclosure

The authors report no conflicts of interest in this work.

Additional information

Funding

This study was supported by grants from Region Skåne, the South Regional Health Care Committee, the Stig Thune Foundation, the Swedish Rheumatism Association, and the Association of Rheumatology Nurses in Sweden. The funding bodies had no role in the study design, data collection, analysis, or interpretation of data or preparation of the manuscript.