S9 Ep9: Are we measuring what matters? Life impact, functioning, and quality of life in youth mental health - A Mind the Kids podcast

In this episode of Mind the Kids, the podcast from the Association for Child and Adolescent Mental Health (ACAMH), host Clara Faria — academic clinical fellow in child psychiatry — is joined by Dr. Karolin Krause, clinical epidemiologist and measurement scientist at the Center for Research in Epidemiology and Statistics (CRESS), Université Paris Cité.

Dr. Krause shares findings from her recently published paper in JCPP, the Journal of Child Psychology and Psychiatry. The paper — a scoping umbrella review — systematically maps 80 instruments used to measure life impact in youth mental health research across three interconnected domains: functioning, quality of life, and well-being. Despite major international core outcome set initiatives — including ICHOM and In-ROADS — consistently identifying functioning and quality of life as critical outcomes alongside symptoms, no consensus exists on which instruments to use, and the landscape remains highly fragmented.

The rationale runs deeper than methodology. Outcomes measurement in child and adolescent mental health is foundational to evidence-based, person-centred care. Symptom severity and life impact do not always move in step — the DSM-5 itself requires both symptom threshold and clinically significant impairment for diagnosis, yet instruments frequently conflate the two constructs, making it difficult to track which improves first in treatment and whether the gains that matter most to young people are being captured. Across the 80 instruments identified, the review found wide variation in informant type, length, age range, and developmental setting. More than a quarter were classified differently across reviews — a consequence of unclear construct definitions, limited co-production with young people, and what the paper terms "jingle-jangle fallacies." A notable gap emerges for the 19–24 age group navigating the transition from CAMHS to adult services, for whom no instrument has been specifically validated.

Clara and Karolin discuss why functioning and life impact deserve dedicated measurement separate from symptom scales, the case for self-report over adult-observer-dominated measures, the trade-offs of multi-informant approaches, and a Wellcome-funded project focused on the development of an evidence synthesis platform for patient-reported outcome measure selection aimed at making evidence-based instrument choice more accessible to researchers worldwide”

A must-listen for anyone working in child and adolescent mental health, CAMHS outcomes, youth mental health outcomes measurement, functioning measures, quality of life in children and young people, patient-reported outcome measures, or routine outcome measurement in research and practice.

The the JCPP paper 'Research Review: Measuring life impact of youth mental health difficulties: scoping umbrella review of 80 instruments'Karolin R. Krause, Sophie Chung, Christiane Konstantopoulos, Terri Rodak, Ana Calderón, Nichol Edwards Snagg, Kristin Cleverley, Nancy J. Butcher, Giovanni A. Salum, Kathleen R. Merikangas, Peter Szatmari First published: 11 March 2026 https://doi.org/10.1111/jcpp.70134

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