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.
Original language | English |
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Pages (from-to) | 692-702 |
Number of pages | 11 |
Journal | The Lancet Psychiatry |
Volume | 7 |
Issue number | 8 |
DOIs | |
Publication status | Published - Aug 2020 |
Externally published | Yes |
Keywords
- adult
- aged
- anxiety
- Article
- automutilation
- caregiver
- cognitive defect
- content analysis
- depression
- expectation
- female
- general practitioner
- health care organization
- health care personnel
- health survey
- human
- male
- mass medium
- mental patient
- motivation
- nurse
- outcome assessment
- patient safety
- priority journal
- psychiatrist
- psychologist
- qualitative analysis
- social isolation
- social media
- social stigma
- suicidal ideation
- suicide attempt
- symptomatology
- violence
- Austria
- epidemiology
- evaluation study
- France
- Germany
- middle aged
- North America
- pain
- physiology
- psychology
- questionnaire
- stereotyping
- United Kingdom
- Adult
- Caregivers
- Depression
- Evaluation Studies as Topic
- Female
- Health Personnel
- Humans
- Male
- Middle Aged
- Motivation
- Outcome Assessment
- Health Care
- Pain
- Physical Functional Performance
- Social Isolation
- Stereotyping
- Surveys and Questionnaires