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

Melissa Mulraney; Umanga de Silva; Andria Joseph; Maria da Luz Sousa Fialho; Iain Dutia; Natalie Munro; Jonathan M Payne; Tobias Banaschewski; Cláudia Bandeira de Lima; Mark A Bellgrove; Samuel R Chamberlain; Phyllis Chan; Ivy Chong; Alison Clink; Samuele Cortese; Eileen Daly; Stephen V Faraone; Melissa Gladstone; Adam J Guastella; Juulia Järvdike; Sidra Kaleem; Mark G Lovell; Tamasin Meller; Peter Nagy; Jeffrey H Newcorn; Guilherme V Polanczyk; Emily Simonoff; Peter Szatmari; Caroline Tehan; Karin Walsh; Susan Wamithi; David Coghill

doi:10.1001/jamanetworkopen.2024.16760

Back

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

Journal article

Open access

Peer reviewed

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

Melissa Mulraney, Umanga de Silva, Andria Joseph, Maria da Luz Sousa Fialho, Iain Dutia, Natalie Munro, Jonathan M Payne, Tobias Banaschewski, Cláudia Bandeira de Lima, Mark A Bellgrove, …

JAMA network open, Vol.7(6), e2416760

13/06/2024

DOI: https://doi.org/10.1001/jamanetworkopen.2024.16760

Appears in Recent Faculty of Health Publications

Files and links (2)

pdf

International Consensus on Standard Outcome Measures for Neurodevelopmental Disorders A Consensus Statement1.03 MBDownload View

Published (Version of record)CC BY V4.0, Open Access

url

International Consensus on Standard Outcome Measures for Neurodevelopmental Disorders A Consensus StatementView

Published (Version of record)CC BY V4.0, Open

Metrics

3 Record Views

See more details

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.

Details

Title: International Consensus on Standard Outcome Measures for Neurodevelopmental Disorders: A Consensus Statement
Creators: Melissa Mulraney - University of Melbourne
Umanga de Silva - International Consortium of Health Outcome Measures (Boston, Massachusetts)
Andria Joseph - International Consortium of Health Outcome Measures (Boston, Massachusetts)
Maria da Luz Sousa Fialho - International Consortium of Health Outcome Measures (Boston, Massachusetts)
Iain Dutia - Australian Catholic University
Natalie Munro - University of Sydney
Jonathan M Payne - Murdoch Children’s Research Institute
Tobias Banaschewski - University of Heidelberg (Mannheim, Germany)
Cláudia Bandeira de Lima - University of Lisbon
Mark A Bellgrove - Monash University
Samuel R Chamberlain - University of Southampton
Phyllis Chan - Queen Mary Hospital
Ivy Chong - May Institute
Alison Clink - Dundee and Angus College
Samuele Cortese - University of Southampton
Eileen Daly - King's College London
Stephen V Faraone - SUNY Upstate Medical University
Melissa Gladstone - University of Liverpool
Adam J Guastella - University of Sydney
Juulia Järvdike - WeMind Suomi (Helsinki, Finland)
Sidra Kaleem - Aga Khan University Hospital
Mark G Lovell - Royal College of Psychiatrists
Tamasin Meller - Northern Beaches Child and Family Health Service (Sydney, Australia)
Peter Nagy - Bethesda Children’s Hospital (Budapest, Hungary)
Jeffrey H Newcorn - Icahn School of Medicine at Mount Sinai
Guilherme V Polanczyk - Universidade de São Paulo
Emily Simonoff - King's College London
Peter Szatmari - University of Toronto
Caroline Tehan - Royal Children's Hospital
Karin Walsh - George Washington University
Susan Wamithi - Aga Khan University Nairobi
David Coghill - University of Melbourne
Publication Details: JAMA network open, Vol.7(6), e2416760
Publisher: American Medical Association
Grant note: This project received funding from the National Health Service (NHS) England and NHS Improvement.
Identifiers: 991013201713702368
Copyright: This is an open access article distributed under the terms of the CC-BY License.
Academic Unit: Faculty of Health
Language: English
Resource Type: Journal article

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

Files and links (2)

Metrics

Abstract

Details

Southern Cross University Social media