Patient Experience Journal (Apr 2016)
Preference-sensitive decisions of patients with metastatic breast cancer: The need for decision support
Abstract
Because of disease progression and the increasing number of treatment options, patients with metastatic breast cancer face multiple decisions over time. Our aim was to identify the multiple decisions patients with metastatic breast cancer face in order to decide which decision aids will be developed. First, we analyzed the clinical practice guidelines to identify decisions encountered by patients with metastatic breast cancer and healthcare professionals. Furthermore, an online questionnaire for patients, a focus group interview with patients and interviews with healthcare professionals were performed. In addition, we performed a systematic literature research and internet search to identify relevant decision support tools and we assessed their quality. Finally, all results were discussed with a mixed group of eight experts, consisting of researchers, patients and healthcare professionals and a comprehensive advice was given which decision aid to develop. It turned out that patients with metastatic breast cancer and healthcare professionals are confronted with eight major decision points regarding treatment and examinations during the care process. We identified four decision aids. These tools partially overlap with some of the identified decision points. Experts advised to develop a decision aid for patients with metastatic breast cancer that would address all mentioned decision points. We concluded patients with metastatic breast cancer and healthcare professionals will benefit from a personalized decision aid in which all eight major decision points are addressed. This decision aid would help patients and healthcare professionals to explore patients’ personal values and preferences in order to make a well-informed decision.