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Treat-to-target and shared decision-making in systemic lupus erythematosus from the patients’ perspective: results from an international patient survey
J. Mucke1, D.T. Pencheva2, A.R. Parra Sánchez3, K. Cramer4, M. Schneider5, I.E. Bultink6
- Department of Rheumatology, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University, Düsseldorf, and Hiller Research Center, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University, Düsseldorf, Germany. johanna.mucke@med.uni-duesseldorf.de
- Department of Physiology and Pathophysiology, Medical University of Sofia, and Department of Rheumatology, University Clinical Hospital St. Ivan Rilski, Sofia, Bulgaria.
- Department of Rheumatology, Amsterdam Rheumatology and Immunology Center, Amsterdam University Medical Center, Amsterdam, and Amsterdam Institute for Infection and Immunity, Amsterdam, The Netherlands.
- Patient Research Partner, Amsterdam, The Netherlands.
- Department of Rheumatology, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University, Düsseldorf, and Hiller Research Center, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University, Düsseldorf, Germany.
- Department of Rheumatology, Amsterdam Rheumatology and Immunology Center, Amsterdam University Medical Center, Amsterdam, and Amsterdam Institute for Infection and Immunity, Amsterdam, The Netherlands.
CER17464
2024 Vol.42, N°9
PI 1744, PF 1749
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PMID: 38757283 [PubMed]
Received: 12/01/2024
Accepted : 28/02/2024
In Press: 29/04/2024
Published: 23/09/2024
Abstract
OBJECTIVES:
Treat-to-target (T2T) is being recognised as a promising concept to significantly improve the outcomes of patients with systemic lupus erythematosus (SLE). Despite its success being closely tied to patients’ involvement, the patients’ perspective regarding T2T has not been evaluated. We aimed to investigate patients’ attitude towards T2T and their involvement in treatment decisions.
METHODS:
We designed a 13-question online survey on T2T, examining acceptance, willingness to participate in T2T trials, and potential obstacles. This was distributed amongst Dutch, Austrian, German, and Bulgarian patient organisations.
RESULTS:
In total, 863 patients participated of whom 48.4% reported being in remission, while 13% were uncertain about their remission status. Regarding shared decision-making, 62.1% reported being somewhat fully involved in treatment decisions, while 20.7% felt uninvolved. Shared decision-making was associated with disease duration, Dutch origin and satisfaction with treatment and remission. As for satisfaction with their health status, 56.2% were somewhat fully satisfied, while 29.3% were unsatisfied. 65.5% were satisfied with their treatment, 14.8% were not. Leading treatment goals were quality of life (QoL) normalisation (37.4%), organ damage prevention (24.6%) and absence of disease activity (22.6%). T2T was mainly seen positive with additional doctors’ visits and initiation of new immunosuppressive drugs as potential disadvantages.
CONCLUSIONS:
T2T was perceived as beneficial with improvement of QoL as the most important treatment goal and the possibility of additional doctors’ visits and initiation of new immunosuppressive agents as potential drawbacks. Patients unsatisfied with their health status and treatment may benefit from greater involvement in treatment decisions.
