Information and decision-making needs among people with affective disorders - results of an online survey

Background: Patient decision aids are one possibility for enabling and encouraging patients to participate in medical decisions. Objective: This paper aims to describe patients' information and decision-making needs as a prerequisite for the development of high-quality, web-based patient decision aids for affective disorders. Design: We conducted an online cross-sectional survey by using a self-administered questionnaire including items on Internet use, online health information needs, role in decision making, and important treatment decisions, performing descriptive and comparative statistical analyses. Participants: A total of 210 people with bipolar disorder/mania as well as 112 people with unipolar depression participated in the survey. Results: Both groups specified general information search as their most relevant information need and decisions on treatment setting (inpatient or outpatient) as well as decisions on pharmacological treatment as the most difficult treatment decisions. For participants with unipolar depression, decisions concerning psychotherapeutic treatment were also especially difficult. Most participants of both groups preferred shared decisions but experienced less shared decisions than desired. Discussion and conclusion: Our results show the importance of information for patients with affective disorders, with a focus on pharmacological treatment and on the different treatment settings, and highlight patients' requirements to be involved in the decision-making process. Since our sample reported a chronic course of disease, we do not know if our results are applicable for newly diagnosed patients. Further studies should consider how the reported needs could be addressed in health care practice.