TY - JOUR
T1 - International Consensus on Standard Outcome Measures for Neurodevelopmental Disorders
T2 - A Consensus Statement
AU - Mulraney, Melissa
AU - De Silva, Umanga
AU - Joseph, Andria
AU - Sousa Fialho, Maria Da Luz
AU - Dutia, Iain
AU - Munro, Natalie
AU - Payne, Jonathan M.
AU - Banaschewski, Tobias
AU - De Lima, Cláudia Bandeira
AU - Bellgrove, Mark A.
AU - Chamberlain, Samuel R.
AU - Chan, Phyllis
AU - Chong, Ivy
AU - Clink, Alison
AU - Cortese, Samuele
AU - Daly, Eileen
AU - Faraone, Stephen V.
AU - Gladstone, Melissa
AU - Guastella, Adam J.
AU - Järvdike, Juulia
AU - Kaleem, Sidra
AU - Lovell, Mark G.
AU - Meller, Tamasin
AU - Nagy, Peter
AU - Newcorn, Jeffrey H.
AU - Polanczyk, Guilherme V.
AU - Simonoff, Emily
AU - Szatmari, Peter
AU - Tehan, Caroline
AU - Walsh, Karin
AU - Wamithi, Susan
AU - Coghill, David
N1 - Publisher Copyright:
© 2024 American Medical Association. All rights reserved.
PY - 2024/6/13
Y1 - 2024/6/13
N2 - 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..
AB - 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..
UR - http://www.scopus.com/inward/record.url?scp=85196099762&partnerID=8YFLogxK
U2 - 10.1001/jamanetworkopen.2024.16760
DO - 10.1001/jamanetworkopen.2024.16760
M3 - Review article
C2 - 38869906
AN - SCOPUS:85196099762
SN - 2574-3805
VL - 7
SP - e2416760
JO - JAMA network open
JF - JAMA network open
IS - 6
ER -