https://orcid.org/0000-0001-7801-3897
Abstract
Background
In rheumatoid arthritis care, patients and healthcare professionals regularly face health treatment decisions. Sorting out what matters to a patient as being relevant to a specific decision is therefore essential.
Methods
An explorative mixed-methods study was performed to investigate patients’ values for health treatment decisions and their importance in order to develop a future decision aid on value clarification. Ten semi-structured interviews with patient partners were conducted followed by an online survey among the broader population of patients. Qualitative content analysis was performed. Data from the online survey were analysed descriptively and quantitatively.
Results
According to patients, 17 important health treatment decisions in rheumatoid arthritis care can occur. The most commonly reported decisions concerned the use of medication. A variety of values may guide patients’ health treatment decisions. We found 66 values among four domains of values – decisional, situational, external and global. Among decisional values, reported main values were a) effectiveness of treatment on inflammation, functioning, pain and fatigue; b) avoiding negative side-effects; and c) keeping in good physical condition. In addition, situational values turned out to be a) staying independent; b) being able to meet people; and c) leading as normal a life as possible. Furthermore, patients prefer healthcare professionals who a) take comorbidity into account, b) have enough time, and c) take the patient seriously in their choices – the external values. Finally, as global values were expressed a) autonomy; b) self-image, and c) intimacy. All values are specified by underlying quotes, for example, the value effectiveness on inflammation; “That inflammation has got to go, because you’ve then got the risk that you’ll develop all kinds of things in the course of time”.
Conclusion
A variety of values may guide patients’ health treatment decisions within rheumatoid arthritis care. Patients and professionals should discuss patients’ values continuously.
Data Sharing Statement
All data are archived by the last author (HV).
Ethics Statement
No ethical approval from a medical ethics committee was needed under Dutch law (WMO) as the study did not involve any interventions designed as part of the study. Written informed consent to participate in this study and to publish anonymized responses was provided by the participants. This study was conducted in accordance with the Declaration of Helsinki.
Patient Authors
Bertha Maat, Theo Foekens, Gerardine Willemsen-de Mey.
Acknowledgments
We would like to thank patient partners of RZN and patients for their contribution to this study.
Author Contributions
All authors contributed to data analysis, drafting or revising the article, gave final approval of the version to be published, agreed to the submitted journal, and agreed to be accountable for all aspects of the work.
Disclosure
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as potential conflicts of interest. Bertha Maat, Theo Foekens, Gerardine Willemsen-de Mey are patient authors for this study. The authors no other conflicts of interest in this work.