TY - JOUR
T1 - Research priorities for children with neurological impairment and medical complexity in high-income countries
AU - Diskin, Catherine
AU - Malik, Kristina
AU - Gill, Peter J.
AU - Rashid, Nada
AU - Chan, Carol Y.
AU - Nelson, Katherine E.
AU - Thomson, Joanna
AU - Berry, Jay
AU - Agrawal, Rishi
AU - Orkin, Julia
AU - Cohen, Eyal
N1 - Funding Information:
The study team acknowledges the time and contribution of the expert clinicians and family caregivers who participated in the study. Ms Francine Buchanan, Research Patient & Family Engagement Coordinator at the Hospital for Sick Children, supported the study team’s effort with the family caregiver involvement. This project was supported by the Canadian Institutes of Health Research (no. FDN‐143315). Dr Thomson was supported by the Agency for Healthcare Research and Quality under award no. K08HS025138.
Publisher Copyright:
© 2021 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.
PY - 2022/2
Y1 - 2022/2
N2 - Aim: To identify the highest-priority clinical research areas related to children with neurological impairment and medical complexity among clinicians and caregivers. Method: A modified, three-stage Delphi study using online surveys and guided by a steering committee was completed. In round 1, clinicians and family caregivers suggested clinical topics and related questions that require research to support this subgroup of children. After refinement of the suggestions by the steering committee, participants contributed to 1 (family caregivers) or 2 (clinicians) subsequent rounds to develop a prioritized list. Results: A diverse international expert panel consisting of 49 clinicians and 12 family caregivers provided 601 responses. Responses were distilled into 26 clinical topics comprising 126 related questions. The top clinical topics prioritized for research were irritability and pain, child mental health, disorders of tone, polypharmacy, sleep, aspiration, behavior, dysautonomia, and feeding intolerance. The clinician expert panel also prioritized 10 specific research questions. Interpretation: Study findings support a research agenda for children with neurological impairment and medical complexity focused on addressing clinical questions, prioritized by an international group of clinicians and caregivers.
AB - Aim: To identify the highest-priority clinical research areas related to children with neurological impairment and medical complexity among clinicians and caregivers. Method: A modified, three-stage Delphi study using online surveys and guided by a steering committee was completed. In round 1, clinicians and family caregivers suggested clinical topics and related questions that require research to support this subgroup of children. After refinement of the suggestions by the steering committee, participants contributed to 1 (family caregivers) or 2 (clinicians) subsequent rounds to develop a prioritized list. Results: A diverse international expert panel consisting of 49 clinicians and 12 family caregivers provided 601 responses. Responses were distilled into 26 clinical topics comprising 126 related questions. The top clinical topics prioritized for research were irritability and pain, child mental health, disorders of tone, polypharmacy, sleep, aspiration, behavior, dysautonomia, and feeding intolerance. The clinician expert panel also prioritized 10 specific research questions. Interpretation: Study findings support a research agenda for children with neurological impairment and medical complexity focused on addressing clinical questions, prioritized by an international group of clinicians and caregivers.
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U2 - 10.1111/dmcn.15037
DO - 10.1111/dmcn.15037
M3 - Article
C2 - 34462917
AN - SCOPUS:85113851749
VL - 64
SP - 200
EP - 208
JO - Developmental Medicine and Child Neurology
JF - Developmental Medicine and Child Neurology
SN - 0012-1622
IS - 2
ER -
