Patient Preference and Adherence (Aug 2020)
“Mastering a New Life Situation” – Patients’ Preferences of Treatment Outcomes in Early Rheumatoid Arthritis – A Longitudinal Qualitative Study
Abstract
Ellen Landgren,1– 3 Ann Bremander,1,3– 5 Elisabet Lindqvist,1,2 Maria Nylander,3,6 Kristien Van der Elst,7 Ingrid Larsson1,3,8 1Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden; 2Department of Rheumatology, Skåne University Hospital, Lund, Sweden; 3Spenshult Research and Development Centre, Halmstad, Sweden; 4Department of Regional Health Research, University of Southern Denmark, Odense, Denmark; 5Danish Hospital for Rheumatic Diseases, University Hospital of Southern Denmark, Sonderborg, Denmark; 6Swedish Rheumatism Association, Stockholm, Sweden; 7Department of Rheumatology, University Hospitals Leuven, Leuven, Belgium; 8School of Health and Welfare, Halmstad University, Halmstad, SwedenCorrespondence: Ingrid LarssonSchool of Health and Welfare, Halmstad University, PO Box 823, Halmstad S-30118, SwedenTel +46 35 167965Email [email protected]: 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
