The lived experience of major and treatment-resistant depression in England: a mixed-methods study.

Major depressive disorder (MDD) is a common, frequently recurrent condition associated with decreased well-being and increased healthcare-related costs. Mixed-methods research provides multiple ways of illustrating the phenomenon to better understand patient experience, including where treatment is not working, referred to here as treatment-resistant depression (TRD). A mixed-methods study investigated the experiences of people with symptomatic MDD, symptomatic TRD or TRD in remission, surveying 148 adults recruited from English clinical sites to measure symptom severity (Patient Health Questionnaire-9 [PHQ-9]), HRQoL (EQ-5D-5L/World Health Organisation Brief Assessment of QoL [WHOQOL-BREF]) and work productivity/activity impairment (WPAI:D). Interviews with 26 survey respondents were analysed thematically. Integrated datasets explored areas of convergence and divergence, with concepts mapped against the EQ-5D-5L. Qualitative data explained low WHOQOL-BREF domain scores and the interrelation of psychological, emotional, cognitive and physical difficulties. Tiredness, lack of energy and motivation impacted daily activities, socialising and career goals. Low work performance scores were explained by poor concentration, decision-making and motivation. Participants also described the influence of social support and housing insecurity. Only 19 % of HRQoL qualitative codes mapped to the EQ-5D-5L. Themes dominant in patients with TRD were inability to cope, self-care challenges, dissatisfaction with mental health services and treatment pessimism. Limited data collected on people with TRD in remission. The EQ-5D-5L and WPAI:D likely underestimate how depression impacts the HRQoL and work of people with MDD or TRD. Qualitative data suggest increased distress for people with TRD compared to those with MDD. Clinical management and treatment access decisions should consider the broader impacts of depression and environmental factors affecting the patient's experience.

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Copyright © 2023 The Authors. Published by Elsevier B.V. All rights reserved.

Déclaration de conflit d'intérêts

Declaration of competing interest TD are employees of Johnson & Johnson with stock options. CK was an employee of Johnson & Johnson when the work was undertaken. KB and LB are employees of OPEN VIE Ltd., doing business as OPEN Health. SAV was an employee of OPEN VIE when the work was undertaken. AY: Employed by King's College London; honorary consultant SLaM (NHS UK); paid lectures and advisory boards for the following companies with drugs used in affective and related disorders: AstraZeneca, Eli Lilly, Lundbeck, Sunovion, Servier, LivaNova, Janssen, Allergan, Bionomics, Sumitomo Dainippon Pharma, and COMPASS; consultant to Johnson & Johnson; consultant to LivaNova; received honoraria for attending advisory boards and presenting talks at meetings organised by LivaNova; principal investigator in the Restore-Life VNS registry study funded by LivaNova; principal investigator on ESKETINTRD3004: “An Open-label, Long-term, Safety and Efficacy Study of Intranasal Esketamine in Treatment-resistant Depression”; principal investigator on “The Effects of Psilocybin on Cognitive Function in Healthy Participants”; principal investigator on “The Safety and Efficacy of Psilocybin in Participants with Treatment-Resistant Depression (P-TRD)”; grant funding (past and present): NIMH (USA), CIHR (Canada), NARSAD (USA), Stanley Medical Research Institute (USA), MRC (UK), Wellcome Trust (UK), Royal College of Physicians (Edinburgh), BMA (UK), UBC-VGH Foundation (Canada); WEDC (Canada); CCS Depression Research Fund (Canada); MSFHR (Canada); NIHR (UK); Janssen (UK); no shareholdings in pharmaceutical companies. SR reports grants from Janssen paid to Southern Health NHS Foundation Trust during the conduct of the study; other educational support from Otsuka, Lundbeck, and Janssen, outside the submitted work. MD was an employee of Johnson & Johnson when informing study design. NJ reports grants from Janssen paid to his institution during the conduct of the study. He has no other conflicts of interest to disclose.