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Cited by 193Treatment of Major DepressionMental Health and Patient InvolvementAnxiety, Depression, Psychometrics, Treatment, Cognitive Processes

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

Chevance, Astrid, Ravaud, Philippe, Tomlinson, Anneka, Le Berre, Catherine, Teufer, Birgit, Touboul, Suzanne, Fried, Eiko I, Gartlehner, Gerald +2 more·2020·The Lancet Psychiatry
DOI 10.1016/s2215-0366(20)30191-7
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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.

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  • Most trials recruit participants attending mental health facilities; these participants do not represent people experiencing depression in the population: they are more likely to have had prior treatments and to have complicated or persistent episodes of depression and high levels of personality disorder comorbidity that may dampen the effects of the active treatment.

    “Furthermore, most trials recruit participants attending mental health facilities. These participants do not represent people experiencing depression in the population 586 : they are more likely to have had prior treatments and to have complicated or persistent episodes of depression and high levels of personality disorder comorbidity 587 that may dampen the effects of the active treatment.”

    From Time for united action on depression: a Lancet–World Psychiatric Association Commission (2022) · cites this paper as [587]

  • The absence of a formal cost-effectiveness analysis and inconsistent reporting of specific adverse events is an important limitation because patients and clinicians make their own judgement considering not only efficacy and acceptability but also the incidence and severity of side-effects.

    “This absence is an important limitation because patients and clinicians make their own judgement, not only considering efficacy and acceptability of treatment but also the incidence and severity of side-effects. 43”

    From Comparative effects of pharmacological interventions for the acute and long-term management of insomnia disorder in adults: a systematic review and network meta-analysis (2022) · cites this paper as [43]

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Authors
Chevance, A., Ravaud, P., Tomlinson, A., Le Berre, C., Teufer, B., Touboul, S., Fried, E. I., Gartlehner, G., Cipriani, A., & Tran, V. T.
Affiliations
  • Université Paris Cité (FR)
  • Inserm (FR)
  • University of Oxford (GB)
  • Universität für Weiterbildung Krems (AT)
  • Leiden University (NL)
  • Oxford Health NHS Foundation Trust (GB)
Corresponding author
Chevance, Astrid
ORCID
Venue
The Lancet Psychiatry
Publisher
Elsevier BV
Published
2020-08
Volume
7
Issue
8
Pages
692-702
ISSN
2215-0366 (ISSN-L)
DOI
10.1016/s2215-0366(20)30191-7
OpenAlex
W3023350371
Cited by
193
References
32
Citations by year
2026: 24 · 2025: 33 · 2024: 28 · 2023: 29 · 2022: 38 · 2021: 34 · 2020: 7
FWCI
16.18
Type
journal article
Language
en
Update notices
erratum (2020-09-01)
Open access
closed
Licence
Locations
  • The Lancet Psychiatry (publishedVersion)
  • PubMed (publishedVersion)
  • HAL (submittedVersion)
  • Leiden Repository (Leiden University) (submittedVersion)
  • Data Archiving and Networked Services (DANS) (submittedVersion)
Funders
  • National Institute for Health and Care Research (RP-2017–08-ST2–006)
  • Fondation pour la Recherche Médicale
  • NIHR Oxford Biomedical Research Centre (BRC-1215–20005)
Topics
  • Health Sciences › Medicine › Pharmacology › Treatment of Major Depression
  • Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
  • Social Sciences › Psychology › Experimental and Cognitive Psychology › Anxiety, Depression, Psychometrics, Treatment, Cognitive Processes
Keywords
depression, outcome domains, patient expectations, informal caregivers, healthcare workers, core outcome set, bipolar depression, psychological suffering, motivation, social isolation, stigmatization, treatment safety, social representations, clinical trial results
MeSH terms
Physical Functional Performance, Adult, Austria, Depression, Evaluation Studies as Topic, Female, France, Germany, United Kingdom, Health Personnel, Humans, Male, Middle Aged, Motivation, North America, Pain, Surveys and Questionnaires, Social Isolation, Stereotyping, Caregivers, Outcome Assessment, Health Care

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