Promoting shared decision making in advanced cancer: Development and piloting of a patient communication aid
Henselmans, Inge; Brugel, Sabrina D.; de Haes, Hanneke C.J.M.; Wolvetang, Kim J.A.; de Vries, Laura M.; Pieterse, Arwen H.; Baas-Thijssen, Monique C.M.; de Vos, Filip Y.F.; van Laarhoven, Hanneke W.M.; Smets, Ellen M.A.
(2019) Patient Education and Counseling, volume 102, issue 5, pp. 916 - 923
(Article)
Abstract
Objective: To learn how to configure a patient communication aid (PCA) to facilitate shared decision-making (SDM) about treatment for advanced cancer. Methods: The PCA consists of education about SDM, a question prompt list, and values clarification methods. Study 1. A first version was presented to 13 patients, 8 relatives and
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14 bereaved relatives in interviews. Study 2. A second version was used by 18 patients in a pilot study. Patients and oncologists were interviewed, patients were surveyed, and consultations were audio-recorded. Results: Respondents reported that the aid facilitated patient control over information, raised choice awareness and promoted elaboration. Risks were identified, most importantly that the aid might upset patients. Also, some respondents reported that the PCA did not, or would not support decision making because they felt sufficiently competent, did not perceive a role for themselves, or did not perceive that the decision required elaboration. Conclusions: Opinions on the usefulness of the PCA varied. It was challenging to raise awareness about the presence of a choice, and to find a balance between comprehensive information and sensitivity. Practice implications: A future study should demonstrate whether the PCA can improve SDM, and whether this effect is stronger when oncologists receive training.
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Keywords: Communication, Oncology, Palliative care, Patient education, Shared decision making, Decision Making, Neoplasms/pathology, Palliative Care/psychology, Humans, Middle Aged, Patient Participation, Male, Physician-Patient Relations, Pilot Projects, Adult, Female, Program Evaluation, Patient Education as Topic, General Medicine, Research Support, Non-U.S. Gov't, Journal Article
ISSN: 0738-3991
Publisher: Elsevier Ireland Ltd
Note: Funding Information: Financial support for this study was provided entirely by a grant from the Dutch Cancer Society (UVA 2013-5949). The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report. The authors thank all the patients and (bereaved) relatives for their valuable contribution to this study. Furthermore, we are grateful to the medical oncologists (in training), the trial coordinators and nurses of the Departments of Medical Oncology of the AMC and the UMC Utrecht who supported the data collection. Funding Information: Financial support for this study was provided entirely by a grant from the Dutch Cancer Society ( UVA 2013-5949 ). The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report. Publisher Copyright: © 2018 Elsevier B.V.
(Peer reviewed)