Astrid Chevance1, Philippe Ravaud2, Anneka Tomlinson3, Catherine Le Berre4, Birgit Teufer5, Suzanne Touboul6, Eiko I Fried7, Gerald Gartlehner8, Andrea Cipriani9, Viet Thi Tran4. 1. Centre of Research in Epidemiology and Statistics Sorbonne Paris Cité, Institute for Health and Medical Research, and French National Institute of Research for Agriculture, University of Paris, Paris, France. Electronic address: astrid.chevance@gmail.com. 2. Centre of Research in Epidemiology and Statistics Sorbonne Paris Cité, Institute for Health and Medical Research, and French National Institute of Research for Agriculture, University of Paris, Paris, France; Department of Epidemiology, Columbia University Mailman School of Public Health, New York, NY, USA. 3. Department of Psychiatry, University of Oxford, Oxford, UK. 4. Centre of Research in Epidemiology and Statistics Sorbonne Paris Cité, Institute for Health and Medical Research, and French National Institute of Research for Agriculture, University of Paris, Paris, France. 5. Department for Evidence-based Medicine and Evaluation, Danube University Krems, Krems, Austria. 6. Experience Expert (patient), Paris, France. 7. Department of Clinical Psychology, Leiden University, Leiden, The Netherlands. 8. Department for Evidence-based Medicine and Evaluation, Danube University Krems, Krems, Austria; RTI International, Research Triangle Park, Durham, NC, USA. 9. Oxford Health NHS Foundation Trust, Warneford Hospital, Oxford, UK.
Abstract
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.
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.
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