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Arthritis patients’ motives for (not) wanting to be involved in medical decision-making and the factors that hinder or promote patient involvement

Abstract

The aim of this study is to gain insight into arthritis patients’ motives for (not) wanting to be involved in medical decision-making (MDM) and the factors that hinder or promote patient involvement. In-depth semi-structured interviews were conducted with 29 patients suffering from Rheumatoid Arthritis (RA). Many patients perceived the questions about involvement in MDM as difficult, mostly because they were unaware of having a choice. Shared decision-making (SDM) was generally preferred, but the preferred level of involvement varied between and within individuals. Preference regarding involvement may vary according to the type of treatment and the severity of the complaints. A considerable group of respondents would have liked more participation than they had experienced in the past. Perceived barriers could be divided into doctor-related (e.g. a paternalistic attitude), patient-related (e.g. lack of knowledge) and context-related (e.g. too little time to decide) factors. This study demonstrates the complexity of predicting patients’ preferences regarding involvement in MDM: most RA patients prefer SDM, but their preference may vary according to the situation they are in and the extent to which they experience barriers in getting more involved. Unawareness of having a choice is still a major barrier for patient participation. The attending physician seems to have an important role as facilitator in enhancing patient participation by raising awareness and offering options, but implementing SDM is a shared responsibility; all parties need to be involved and educated.

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Acknowledgments

The authors thank the rheumatologists for recruiting the patients and respondents for participating in this study. This study was financially supported by the Dutch Arthritis Foundation.

Ethical standards

The study did not need approval of the ethical review board according to the Dutch Medical Research Involving Human Subjects Act (WMO); only (non-intervention) studies with a high burden for patients have to be reviewed. All persons gave their informed consent prior to their inclusion in the study. The authors confirm that all patient/personal identifiers have been removed or disguised, so the person(s) described are not identifiable and cannot be identified through the details of the story.

Financial supporter

The Dutch Arthritis Association.

Conflict of interest

None.

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Correspondence to Ingrid Nota.

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Nota, I., Drossaert, C.H.C., Taal, E. et al. Arthritis patients’ motives for (not) wanting to be involved in medical decision-making and the factors that hinder or promote patient involvement. Clin Rheumatol 35, 1225–1235 (2016). https://doi.org/10.1007/s10067-014-2820-y

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  • DOI: https://doi.org/10.1007/s10067-014-2820-y

Keywords

  • Medical decision-making
  • Patient involvement
  • Patient participation
  • Rheumatoid arthritis
  • Shared decision-making