Emma Morton1, Phyllis Foxworth2, Pam Dardess3, Cara Altimus4, J Raymond DePaulo5, Sai Snigdha Talluri6, Erin E Michalak1, Patricia D Rinvelt7, Patrick W Corrigan6, Carolyn Turvey8. 1. Department of Psychiatry, University of British Columbia, Vancouver, BC, Canada. 2. Depression and Bipolar Support Alliance, Chicago, IL, USA. 3. Institute for Patient- and Family-Centered Care, McLean, VA, USA. 4. Milken Institute Center for Strategic Philanthropy, Santa Monica, CA, USA. 5. Department of Psychiatry and Behavioural Sciences, John Hopkins University School of Medicine, Baltimore, MD, USA; National Network of Depression Centers, Ann Arbor, MI, USA. 6. Department of Psychology, Illinois Institute of Technology, Chicago, IL, USA. 7. National Network of Depression Centers, Ann Arbor, MI, USA. 8. National Network of Depression Centers, Ann Arbor, MI, USA; Department of Psychiatry, University of Iowa, Iowa City, IA, USA; Office of Rural Health Resource Center, Iowa City VA Health Care System, Iowa City IA, USA; Center for Access Delivery Research and Evaluation, Iowa City VA Health Care System, Iowa City IA, USA.
Abstract
BACKGROUND: The lived experience of people with mood disorders may be leveraged to inform priorities for research, define key treatment outcomes, and support decision-making in clinical care. The aim of this mixed-methods project was to provide insight into how people with depression and bipolar disorder experience the impact of symptoms, their treatment preferences, and their definitions of wellness. METHODS: The project was implemented in two phases. In Phase 1, community-based participatory research was used to develop a web-based survey enquiring about living with a mood disorder, treatment experiences, and wellness priorities. In Phase 2, a series of focus groups were conducted to explore aspects of wellness in greater detail. RESULTS: Respondents (n= 6153) described the symptoms of mood disorders as having a significant, chronic impact on their lives. A holistic approach to treatment was desired by participants, but not necessarily experienced. Qualitative findings were used to further describe four highly ranked wellness priorities identified in the survey: ability to act independently or according to my own will; purpose in life; getting through the day; and contentment. LIMITATIONS: Experience of a mood disorder was self-reported, and no formal confirmation of diagnosis occurred. Although the survey could not incorporate all possible wellness definitions, this was supplemented by qualitative focus groups. CONCLUSION: The present findings provide important insights from the perspectives of individuals with lived experience of mood disorders. Implications of this for research and clinical practice are discussed, particularly with regards to measurement-based care and use of wellness-oriented clinical outcome assessments.
BACKGROUND: The lived experience of people with mood disorders may be leveraged to inform priorities for research, define key treatment outcomes, and support decision-making in clinical care. The aim of this mixed-methods project was to provide insight into how people with depression and bipolar disorder experience the impact of symptoms, their treatment preferences, and their definitions of wellness. METHODS: The project was implemented in two phases. In Phase 1, community-based participatory research was used to develop a web-based survey enquiring about living with a mood disorder, treatment experiences, and wellness priorities. In Phase 2, a series of focus groups were conducted to explore aspects of wellness in greater detail. RESULTS: Respondents (n= 6153) described the symptoms of mood disorders as having a significant, chronic impact on their lives. A holistic approach to treatment was desired by participants, but not necessarily experienced. Qualitative findings were used to further describe four highly ranked wellness priorities identified in the survey: ability to act independently or according to my own will; purpose in life; getting through the day; and contentment. LIMITATIONS: Experience of a mood disorder was self-reported, and no formal confirmation of diagnosis occurred. Although the survey could not incorporate all possible wellness definitions, this was supplemented by qualitative focus groups. CONCLUSION: The present findings provide important insights from the perspectives of individuals with lived experience of mood disorders. Implications of this for research and clinical practice are discussed, particularly with regards to measurement-based care and use of wellness-oriented clinical outcome assessments.
Authors: François Therrien; Stine R Meehan; Catherine Weiss; Jennifer Dine; T Michelle Brown; Erin M MacKenzie Journal: J Patient Rep Outcomes Date: 2022-10-12