Addressing Urgent Knowledge Gaps in Youth Mental Health Research

Karolin Krause is a postdoctoral research fellow and methodologist with the Cundill Centre for Child and Youth Depression at the Centre for Addiction and Mental Health in Toronto. Her research focuses on the measurement of treatment outcomes for common youth mental health challenges like anxiety and depression, and on how to make measurement meaningful to youth, families and clinicians. Karolin is particularly interested in the measurement of outcomes that go beyond psychiatric symptoms, such as improved functioning in daily life or improved coping skills. Karolin’s work further seeks to help streamline measurement approaches (e.g. the choice of measurement scales) across research studies to enable research syntheses. Karolin has been involved in several initiatives to develop measurement standards, including as a research fellow with the International Consortium for Health Outcomes Measurement (ICHOM), as a co-investigator with the IN-ROADS and COMPACT initiatives at the Hospital for Sick Children in Toronto, and as an advisor with the International Alliance of Mental Health Research Funders.

Karolin obtained her PhD from University College London in 2020. Her thesis used mixed methods to examine perceptions of “good outcome” and outcome priorities in the research literature, and amongst youth, parents, and clinicians in relation to youth depression. Before starting her PhD, Karolin spent five years conducting policy and program evaluations on behalf of the UK Department for International Development, and with the Organization for Economic Cooperation and Development (OECD) – often having to negotiate outcome priorities with various stakeholder groups. Karolin holds an MSc in Sociology from the London School of Economics and Political Sciences, and a BA in Sociology from the Georg-August University of Göttingen in Germany.

Project Summary: When diagnosing common mental health conditions like anxiety, depression, substance use, or self-harm, or when evaluating treatments, clinicians and researchers must consider both the severity of mental health symptoms, and the extent to which these symptoms cause functional impairment – that is, limitations in a young person’s ability to take part in activities of daily life. Impairment is central to clinical and public health decision-making. Yet, while symptom measurement is comparatively well developed in youth mental health, the measurement of impairment has been neglected. One critical gap is a lack of data about how youth experience impairment and whether available measurement scales meaningfully capture their experiences (i.e. have “content validity”). Another challenge is a lack of youth-centred and easily interpretable indicators that can help us make sense of change in impairment scores on any given scale.

My research program at the Cundill Centre for Child and Youth Depression seeks to address these gaps. I am currently finalizing a scoping literature review to identify all functional impairment scales that are available in youth mental health. Building upon this previous work, my program will involve two strands. As part of the first strand, I will conduct focus groups with culturally and gender-diverse youth aged 14-24 years with lived experience of anxiety, depression, substance use or self-harm to explore what impairment means to them. Together with youth as co-researchers I will then develop a check-list to assess how relevant and comprehensive existing scales are in capturing impairment in line with young people’s perspectives and experiences. As part of the second project strand, I will aim to determine the minimally important change (MIC) indicator for two commonly used impairment scales. The MIC is an easy-to-interpret threshold that indicates whether or not a young person’s functioning (or other outcome of interest) has improved by the minimum amount that is considered important by youth themselves. I will determine the MIC using data from two intervention trials that involved youth aged 13-18 years, using Receiver Operating Characteristics (ROC) analysis and predictive modelling.

This research addresses urgent knowledge gaps regarding the content validity and interpretability of impairment scales. It will inform future efforts to identify the most suitable scales to recommend for the meaningful and youth-centred assessment of impairment in youth mental health.