Identifying outcomes for depression that matter to patients, informal caregivers, and health-care professionals: qualitative content analysis of a large international online survey. (August 2020)

• Record Type: Journal Article
• Authors: Chevance, Astrid; Ravaud, Philippe; Tomlinson, Anneka; Le Berre, Catherine; Teufer, Birgit; Touboul, Suzanne; Fried, Eiko I; Gartlehner, Gerald; Cipriani, Andrea; Tran, Viet Thi
• Is Part Of: Lancet. Volume 7:Number 8(2020)
• Page Start: 692
• Page End: 702
• Publication Date: 2020-08
• Subjects: Psychiatry -- Periodicals; 616.89
• DOI: 10.1016/S2215-0366(20)30191-7
• Languages: English
• ISSNs: 2215-0366

Abstract

Summary: Background: Many clinical trials have assessed treatments for depressive disorders and bipolar depression. However, whether, and which, assessed outcome domains really matter to patients, informal caregivers, and health-care professionals remains unclear. Methods: We did an international online survey in French, German, and English. Participants were adult patients with a history of depression, informal caregivers, and health-care professionals, recruited by purposeful sampling. To identify outcome domains, participants answered four open-ended questions about their expectations for depression treatment. We disseminated the survey without restriction via social media, patient and professional associations, and a media campaign. Four researchers independently did qualitative content analyses. We assessed data saturation using mathematical models to ensure the comprehensive identification of outcome domains. Findings: Between April 5, 2018, and Dec 10, 2018, 1912 patients, 464 informal caregivers, and 627 health-care professionals from 52 countries provided 8183 open-ended answers. We identified 80 outcome domains related to symptoms (64 domains), such as mental pain (or psychological or psychic pain, 523 [17%] of 3003 participants) and motivation (384 [13%]), and functioning (16 domains), such as social isolation (541 [18%]). We identified 57 other outcome domains regarding safety of treatment, health care organisation, and social representation, such as stigmatisation (408 [14%]). Interpretation: This study provides a list of outcome domains important to patients, informal caregivers, and health-care professionals. Unfortunately, many of these domains are rarely measured in clinical trials. Results from this study should set the foundation for a core outcome set for depression. Funding: Fondation pour la Recherche Medicale and NIHR Oxford Health Biomedical Research Centre.