Patient readiness for shared decision making about treatment: Conceptualisation and development of the ReadySDM

Health Expectations, vol. 27, pp. e13995

Abstract

Abstract Introduction Shared decision making (SDM) requires an active role of both clinicians and patients. We aimed to conceptualise patient readiness for SDM about treatment, and to develop a patient questionnaire to assess readiness. Methods We used the results of a scoping review and a qualitative study to inform the patient readiness construct. We conducted five additional rounds of data collection to finalise the construct definition and develop the Patient Readiness for SDM Questionnaire (ReadySDM) in an oncological setting: (1) longitudinal interviews with patients with cancer during and after a treatment decision‐making process; (2) a pilot study among experts, clinicians, and patients for feedback on the concept and items; (3) a field test among (former) patients with cancer to test item format and content validity, and to reduce the number of items; (4) cognitive interviews with people with low literacy to test the comprehensibility of the questionnaire; and (5) a field test among (former) patients who faced a cancer treatment decision in the last year, to test the content validity of the final version of the questionnaire. Results A total of 251 people participated in the various rounds of data collection. We identified eight elements of patient readiness for SDM about treatment: (1) understanding of and attitude towards SDM; (2) information skills; (3) skills in communicating and claiming space; (4) self‐awareness; (5) consideration skills; (6) self‐efficacy; (7) emotional distress; and (8) experienced time. We developed the 20‐item ReadySDM to retrospectively measure these elements in an oncological setting. Conclusion We conducted a thorough procedure to conceptualise patient readiness and to develop the ReadySDM. The questionnaire aims to provide novel insights into ways to enhance SDM in daily practice. Patient or Public Contribution Multiple people with lived experience were involved in various phases of the study. They were asked for input on the study design, the conceptualisation of readiness, and the development of the questionnaire.

Authors 3

1. Sascha M. Keij corresponding Aachen Department of Biomedical Data Sciences

   Leiden University Medical Center

   Affiliation as printed

   Department of Biomedical Data Sciences, Medical Decision Making Leiden University Medical Center Leiden The Netherlands

2. Anne Margarethe Stiggelbout Aachen Department of Biomedical Data Sciences

   Leiden University Medical Center · Erasmus University Rotterdam

   Affiliation as printed

   Department of Biomedical Data Sciences, Medical Decision Making Leiden University Medical Center Leiden The Netherlands

   Erasmus School of Health Policy and Management Erasmus University Rotterdam Rotterdam The Netherlands

3. Arwen H. Pieterse Aachen Department of Biomedical Data Sciences

   Leiden University Medical Center

   Affiliation as printed

   Department of Biomedical Data Sciences, Medical Decision Making Leiden University Medical Center Leiden The Netherlands