Supporting Wellness: Initial Findings from a Survey of Lived Experience and Research Priorities of Depression and Bipolar
By Cara Altimus
In 2018, the Milken Institute Center for Strategic Philanthropy and the Depression and Bipolar Support Alliance collaborated to develop a first of its kind community survey. The goal was to learn about the experiences of people living with depression and/or bipolar and ultimately to use this insight to guide research prioritization and drug development efforts.
The national survey garnered 6,405 responses from people living with depression and/or bipolar or providing care to someone with one of these conditions. Respondents reported how they experience depression and/or bipolar, when their symptoms began, and how those symptoms impact their ability to function in daily life. In addition, they provided key insights into the research they believe would significantly affect their lives. Overall, the survey informed understanding of how the community experiences these conditions, as well as highlighted significant treatment gaps and research priorities.
- A majority of respondents experience both depression and bipolar symptoms challenging clinicians’ traditional practice of diagnosing one or the other and potentially leaving key aspects of the individual’s experience unaddressed.
- Although organizations such as the World Health Organization have quantified depression and bipolar prevalence by age, recent reports exclude prepubescent children (those under 12) and emphasize increased prevalence in adulthood. These studies may be neglecting a critical period of mood disorder onset because participant responses indicated that earlier onset corresponds to greater immediate and lifelong impact.
- It remains crucial to value input from people with lived experience, which is often missed in traditional methods of study.