What treatment outcomes matter most? A Q-study of outcome priority profiles among youth with lived experience of depression

Interest in youth perspectives on what constitutes an important outcome in the treatment of depression has been growing, but limited attention has been given to heterogeneity in outcome priorities, and minority viewpoints. These are important to consider for person-centred outcome tracking in clinical practice, or when conducting clinical trials targeting specific populations. This study used Q-methodology to identify outcome priority profiles among youth with lived experience of service use for depression. A purposive sample of 28 youth (aged 16–21 years) rank-ordered 35 outcome statements by importance and completed brief semi-structured interviews eliciting their sorting rationales. By-person principal component analysis was used to identify outcome priority profiles based on all Q-sort configurations. Priority profiles were described and interpreted with reference to the qualitative interview data. Four distinct outcome priority profiles were identified: “Relieving distress and experiencing a happier emotional state”; “Learning to cope with cyclical distressing emotional states”; “Understanding and processing distressing emotional states”; and “Reduced interference of ongoing distressing emotional states with daily life”. All four profiles prioritised improvements in mood and the ability to feel pleasure but differed in the level of importance assigned to learning coping skills, processing experiences, and the reduced interference of depression with life and identity. As part of a person-centered approach to care delivery, care providers should routinely engage young people in conversation and shared decision-making about the types of change they would like to prioritise and track during treatment, beyond a common core of consensus outcomes. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00787-021-01839-x.