What outcomes matter to service users who experience persistent depression: A mixed-method narrative review and synthesis

Abstract

• Outcomes in persistent depression have been neglected, especially from the patient perspective. • Patients experiencing depression report factors beyond recovery from symptoms to be significant when defining and measuring important outcomes, highlighting how existing measures are not representative of a proposed language of recovery from the patient perspective. • Differentiations in perspectives exist across treatment timepoints, type of depression, gender, depression severity, and clinician verses patient views, when considering outcomes for depression. • Approaches such as focus groups and quantitative work examining meaningful change should be applied to populations with persistent depression, accompanied by service user involvement at every level of the commissioning process, to produce an effective treatment pathway. It is unclear whether current outcome measures capture what is important to service users experiencing treatment-resistant depression (TRD). This review aims to understand what outcomes are important to people receiving treatment for TRD, and to ascertain how this is being measured or could be measured to aid values-based commissioning in the implementation of specialist services. A systematic search was conducted across nine databases: EMBASE, PSychINFO, AMED, EMCARE, PubMed, BNI, HMIC, CINHAL, and Medline. Quantitative and qualitative studies, and non-empirical work were included. No publication date restrictions were set. Included studies were appraised for quality. Twenty-two studies met inclusion for the review, including two opinion pieces. Thematic analysis was used to extract five themes: important outcomes beyond recovery from symptoms; differentiations in perspectives; patient preferences; essential sets of outcome measures; and underdeveloped outcome measures from the patient's perspective. The search strategy was partially systematic due to the exploratory nature of the subject and the lack of available research in the field. Studies included collect data on patient perspectives but did not demonstrate co-production throughout the whole research process. Outcomes in persistent depression have been neglected, especially from the patient perspective. The findings from this review make an important contribution to agreeing desirable outcomes for people with TRD by drawing together the literature and highlighting how and why it is necessary to apply certain methods to persistent depression. The report identifies areas where further understanding and research is needed and how to inform current service commissioning practices.