International Consensus on Standard Outcome Measures for Neurodevelopmental Disorders: A Consensus Statement

Melissa Mulraney, Department of Paediatrics, University of Melbourne, Parkville, Australia.
Umanga de Silva, International Consortium of Health Outcome Measures, Boston, Massachusetts.
Andria Joseph, International Consortium of Health Outcome Measures, Boston, Massachusetts.
Maria da Sousa Fialho, International Consortium of Health Outcome Measures, Boston, Massachusetts.
Iain Dutia, School of Allied Health, Australian Catholic University, Brisbane, Australia.
Natalie Munro, Faculty of Medicine and Health, The University of Sydney, New South Wales, Australia.
Jonathan M. Payne, Murdoch Children's Research Institute, Melbourne, Australia.
Tobias Banaschewski, Child and Adolescent Psychiatry and Psychotherapy, Central Institute of Mental Health, Medical Faculty Mannheim, University of Heidelberg, Mannheim, Germany.
Cláudia Bandeira de Lima, Institute for Evidence Based Healthcare at University of Lisbon School and Medicine, Lisbon, Portugal.
Mark A. Bellgrove, Turner Institute for Brain and Mental Health and School of Psychological Sciences, Monash University, Melbourne, Australia.
Samuel R. Chamberlain, Department of Psychiatry, Faculty of Medicine, University of Southampton, Southampton, UK.
Phyllis Chan, Department of Psychiatry, Queen Mary Hospital, Hong Kong.
Ivy Chong, May Institute Inc, Randolph, Massachusetts.
Alison Clink, Dundee & Angus ADHD Support Group, Dundee, UK.
Samuele Cortese, Centre for Innovation in Mental Health, School of Psychology, Faculty of Environmental and Life Sciences, University of Southampton, Southampton, UK.
Eileen Daly, Department of Forensic and Neurodevelopmental Sciences, King's College London, London, UK.
Stephen V. Faraone, Department of Neuroscience and Physiology, Norton College of Medicine at SUNY Upstate Medical University, Syracuse, New York.
Melissa Gladstone, Department of Women and Children's Health, Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK.
Adam J. Guastella, Brain and Mind Centre, Children's Hospital Westmead Clinical School, Faculty of Medicine and Health, University of Sydney, New South Wales, Australia.
Juulia Järvdike, WeMind Suomi, Helsinki, Finland.
Sidra Kaleem, Department of Pediatrics and Child Health, Aga Khan University Hospital, Karachi, Pakistan.
Mark G. Lovell, Tees, Esk, and Wear Valleys NHS Foundation Trust, Middlesbrough, UK.
Tamasin Meller, Northern Beaches Child and Family Health Service, Sydney, Australia.
Peter Nagy, Division of Neurodevelopmental Disorders, Bethesda Children's Hospital, Budapest, Hungary.
Jeffrey H. Newcorn, Department of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, New York.
Guilherme V. Polanczyk, Department of Psychiatry, Faculdade de Medicina, Universidade de São Paulo, São Paulo, Brazil.
Emily Simonoff, Department of Child and Adolescent Psychiatry, King's College London, London, UK.
Peter Szatmari, Centre for Addiction and Mental Health University of Toronto, Toronto, Ontario, Canada.
Caroline Tehan, The Royal Children's Hospital, Melbourne, Australia.
Karin Walsh, Division of Neuropsychology, Children's National Hospital and The George Washington University School of Medicine, Washington, DC.
Susan Wamithi, Department of Paediatrics, Child & Adolescent Health, Aga Khan University Medical College, Nairobi, Kenya.
David Coghill, Department of Paediatrics, University of Melbourne, Parkville, Australia.

Document Type

Journal Article

Publication Date

6-3-2024

Journal

JAMA network open

Volume

7

Issue

6

DOI

10.1001/jamanetworkopen.2024.16760

Abstract

IMPORTANCE: The use of evidence-based standardized outcome measures is increasingly recognized as key to guiding clinical decision-making in mental health. Implementation of these measures into clinical practice has been hampered by lack of clarity on what to measure and how to do this in a reliable and standardized way. OBJECTIVE: To develop a core set of outcome measures for specific neurodevelopmental disorders (NDDs), such as attention-deficit/hyperactivity disorder (ADHD), communication disorders, specific learning disorders, and motor disorders, that may be used across a range of geographic and cultural settings. EVIDENCE REVIEW: An international working group composed of clinical and research experts and service users (n = 27) was convened to develop a standard core set of accessible, valid, and reliable outcome measures for children and adolescents with NDDs. The working group participated in 9 video conference calls and 8 surveys between March 1, 2021, and June 30, 2022. A modified Delphi approach defined the scope, outcomes, included measures, case-mix variables, and measurement time points. After development, the NDD set was distributed to professionals and service users for open review, feedback, and external validation. FINDINGS: The final set recommends measuring 12 outcomes across 3 key domains: (1) core symptoms related to the diagnosis; (2) impact, functioning, and quality of life; and (3) common coexisting problems. The following 14 measures should be administered at least every 6 months to monitor these outcomes: ADHD Rating Scale 5, Vanderbilt ADHD Diagnostic Rating Scale, or Swanson, Nolan, and Pelham Rating Scale IV; Affective Reactivity Index; Children's Communication Checklist 2; Colorado Learning Disabilities Questionnaire; Children's Sleep Habits Questionnaire; Developmental-Disability Children's Global Assessment Scale; Developmental Coordination Disorder Questionnaire; Family Strain Index; Intelligibility in Context Scale; Vineland Adaptive Behavior Scale or Repetitive Behavior Scale-Revised and Social Responsiveness Scale; Revised Child Anxiety and Depression Scales; and Yale Global Tic Severity Scale. The external review survey was completed by 32 professionals and 40 service users. The NDD set items were endorsed by more than 70% of professionals and service users in the open review survey. CONCLUSIONS AND RELEVANCE: The NDD set covers outcomes of most concern to patients and caregivers. Use of the NDD set has the potential to improve clinical practice and research.

Department

Psychiatry and Behavioral Sciences

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