Decisional needs assessment of patients with complex care needs in primary care

Rationale Patients with complex care needs who frequently use health services often face challenges in managing their health and with integrated care, leading to frequent decision making. These complex care needs require a good understanding of health issues and their impact on daily life. As the decisional needs of this particular clientele have yet to be described in scientific literature, they warrant further study. Objectives To assess the decision-making needs of patients with complex care needs (PCCN) who frequently use health care services. Methods We performed a multicenter cross-sectional qualitative descriptive study in four institutions of the health and social services network of Quebec (Canada). We enrolled a convenience sample of PCCNs who frequently use health care services, health care providers, case managers, and decision-makers. We conducted interviews and focus groups and investigated decisional needs according to the Ottawa decision support framework: roles played and desired in the decision-making process, facilitators, and barriers. We conducted qualitative data collection and qualitative deductive/inductive thematic analysis within and across participating groups. Results In total, 16 patients, 38 clinicians, six case managers, and 14 decision-makers participated in the study. The decisional needs of this clientele are numerous, varied and different from those of the general population. We identified 26 decisional needs grouped under five themes. The most frequent decisions related to visiting the emergency department, moving to a nursing home, and adhering to a plan or treatment. In addition, we identified new themes such as patients' fear and mistrust of health professionals, differences of opinion between health professionals and health professionals' preconceived opinions of patients. Conclusion We observed a wide range of types of decisions that patients face and differences in decision-making needs across participating groups. Our results should inform future research on the development of a patient decision aid tool.