What Treatment Outcomes Matter Most? A Q-study of Outcome Priority Profiles Among Youth with Lived Experience of Depression

Abstract

Objective: Over the past years, 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-centered outcome tracking in clinical practice, or when conducting clinical trials targeting specific populations. This study used Q-methodology to identify outcome priority profiles amongst youths with lived experience of service use for depression. Method: A purposive sample of 28 youths (aged 16-21 years) rank-ordered 35 outcomes 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. Results: Four distinct outcome priority profiles were identified: 'symptom reduction and enhanced well-being'; 'improved coping and self-management'; 'better understanding past and present'; and 'less interference with daily life'. All four profiles prioritized outcomes related to improved mood and affect over other outcome concepts. Beyond these core outcomes, profiles differed in the level of importance assigned to learning practical coping skills, processing experiences, finding safe ways to articulate emotions, and reduced interference of depression with life and identity. Conclusion: 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 prioritize and track during treatment, beyond a common core of consensus outcomes.

Understanding the illness representations of young people with anxiety and depression: A qualitative study

“…Our findings, whereby youth place a strong emphasis on learning to cope with anxiety and depression, are in line with existing qualitative research about young people’s treatment outcome priorities suggesting that youth assign similar levels of importance to learning to cope and self‐manage, as they do to symptom reduction (Krause, Edbrooke‐Childs, Edbrooke‐Childs, Bear, Calderón, & Wolpert, 2020; Krause, Midgley, Midgley, Edbrooke‐Childs, & Wolpert, 2020b). Yet, learning to cope is rarely an outcome of interest in treatment trials for youth depression (Krause, Bear, Edbrooke‐Childs, & Wolpert, 2019) and anxiety.…”

Idiographic patient reported outcome measures (I‐PROMs) for routine outcome monitoring in psychological therapies: Position paper

“…Improvements in mood and capacity for hedonia were a priority for all participants. However other outcomes such as learning coping skills, processing experiences, and functioning were important to differing degrees across profiles (Krause et al, 2020). Tailoring assessment using I-PROMs may contribute to the enhancement of treatment goals agreement (e.g., Sales et al, 2019), leading to the development of the therapeutic alliance (Bordin, 1979).…”

“…Research indicates that patients, even with the same diagnosis, may have very different expectations of therapy (Grosse & Grawe, 2002; Rajkarnikar, 2009). For instance, Krause et al (2020) found different outcome priority profiles for young people with experience of depression. Improvements in mood and capacity for hedonia were a priority for all participants.…”

“…In addition, thematic analysis of I‐PROM free‐text items indicates that more than 50% of I‐PROM contents are not featured in the pre‐set items of their nomothetic PROMs counterparts, creating considerable nonoverlap between these two modalities of outcome measurement (Alves et al, 2020; Ashworth et al, 2007; Sales et al, 2018). This may be why, when measuring change on items that are of key importance to the patient, I‐PROMs change scores have consistently been found to exceed nomothetic PROMs change scores for both adults and youth (Ashworth et al, 2005; Edbrooke‐Childs et al, 2015; Elliott et al, 2016; Jacob et al, 2021; Karpenko & Owens, 2013; Krause et al, 2020).…”

A Pluralistic Perspective on Research in Psychotherapy: Harnessing Passion, Difference and Dialogue to Promote Justice and Relevance

“…Historical analysis by McPherson and Armstrong (2021 ) has demonstrated that the concept of depression embodied in these measures has become narrower over time. Other studies have analysed qualitative evidence around how clients, their family members and therapists decide whether therapy has had an effect on depression and has found that these stakeholders make use of a much wider set of outcome criteria than those deployed in research studies ( Catchpole, 2020 ; Chevance et al, 2020 ; De Smet et al, 2020 ; Krause et al, 2020a , b ). Research into the experience of depression in everyday life has found that lay people possess complex and highly differentiated discourses and frameworks for making sense of recovery from depression ( Hänninen and Valkonen, 2019 ; Llewellyn-Beardsley et al, 2019 ; Bear et al, 2021 ), including a range of possible pathways to change ( Valkonen et al, 2011 ).…”