The impact of treatment-resistant depression on the lives of carers: A mixed-methods study.

The lived experiences of informal carers of people with depression, particularly those with treatment-resistant depression (TRD), are rarely explored, despite their vital supportive role. This mixed-methods study explored the quality of life (QoL) and experiences of carers of individuals with symptomatic TRD (Carers-Sym-TRD; n = 79) or in remission post-TRD (Carers-Rem-TRD; n = 20). Participating carers completed quantitative surveys measuring health-related and broader QoL (EQ-5D-5L/WHOQOL-BREF) and work productivity/activity impairment (WPAI:MM-CG). Interviews were also conducted with 12 Carers-Sym-TRD and 11 Carers-Rem-TRD and analysed thematically. Carers-Sym-TRD had impaired QoL compared with Carers-Rem-TRD, with significantly lower EQ-5D-5L index values (median = 0.84/1.00, respectively; p = 0.020) and WHOQOL-BREF overall score (median = 63.0/70.1; p < 0.001), physical health (median = 15.3/17.3; p < 0.001), psychological health (median = 13.3/14.7; p = 0.017), social relationships (median = 13.3/14.7; p = 0.017) and environment (median = 14.5/16.5; p = 0.011) domain scores. Work productivity/activity impairment was greatest in Carers-Sym-TRD across most WPAI:MM-CG domains, with a higher degree of impairment reported on the presenteeism and work productivity domains, however, there were no significant differences between the carer groups. Interview data suggested that impacts on carers' psychological/emotional wellbeing led to physical problems, which affected cognition and daily performance; Also, successful treatment for the person with depression helped carers worry less and reclaim their independence. Recruitment challenges limited the Carers-Rem-TRD sample; clinical validation of the patient's depression diagnosis was not confirmed for all carers. TRD has an extensive adverse impact on carers' lives. Carers-Sym-TRD had significantly impaired QoL across a variety of domains compared with Carers-Rem-TRD, suggesting that achieving remission not only benefits patients but also those who care for them.

Informations de copyright

Copyright © 2023 Elsevier B.V. All rights reserved.

Déclaration de conflit d'intérêts

Conflict of interest TD and CK are employees of Johnson & Johnson with stock options. JE, SAV and LB are employees of OPEN VIE Ltd., doing business as OPEN Health. AY: Employed by King's College London; Honorary Consultant SLaM (NHS UK); Deputy Editor, BJPsych Open; 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, COMPASS, Sage; 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)”; UK Chief Investigator for Novartis MDD study MIJ821A12201; 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 (Edin), BMA (UK), UBC-VGH Foundation (Canada); WEDC (Canada), CCS Depression Research Fund (Canada), MSFHR (Canada), NIHR (UK), Janssen (UK); No shareholdings in pharmaceutical companies. NJ: Reports grants from Janssen paid to their institution during the conduct of the study. No other conflicts of interest to disclose. MD: Was an employee of Johnson & Johnson when informing study design. 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.