Research priorities for children with neurological impairment and medical complexity in high-income countries

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, clini...

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Main Authors: Agrawal, R. (Author), Berry, J. (Author), Chan, C.Y (Author), Cohen, E. (Author), Diskin, C. (Author), Gill, P.J (Author), Malik, K. (Author), Nelson, K.E (Author), Orkin, J. (Author), Rashid, N. (Author), Thomson, J. (Author)
Format: Article
Language:English
Published: John Wiley and Sons Inc 2022
Subjects:
Online Access:View Fulltext in Publisher
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020 |a 00121622 (ISSN) 
245 1 0 |a Research priorities for children with neurological impairment and medical complexity in high-income countries 
260 0 |b John Wiley and Sons Inc  |c 2022 
300 |a 9 
856 |z View Fulltext in Publisher  |u https://doi.org/10.1111/dmcn.15037 
520 3 |a 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. © 2021 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press. 
650 0 4 |a Biomedical Research 
650 0 4 |a caregiver 
650 0 4 |a Caregivers 
650 0 4 |a child 
650 0 4 |a Child 
650 0 4 |a comorbidity 
650 0 4 |a Comorbidity 
650 0 4 |a consensus 
650 0 4 |a Consensus 
650 0 4 |a Delphi study 
650 0 4 |a Delphi Technique 
650 0 4 |a Developed Countries 
650 0 4 |a developing country 
650 0 4 |a family 
650 0 4 |a Family 
650 0 4 |a human 
650 0 4 |a Humans 
650 0 4 |a medical research 
650 0 4 |a Nervous System Diseases 
650 0 4 |a neurologic disease 
650 0 4 |a nurse practitioner 
650 0 4 |a Nurse Practitioners 
650 0 4 |a physician 
650 0 4 |a Physicians 
650 0 4 |a stakeholder engagement 
650 0 4 |a Stakeholder Participation 
700 1 0 |a Agrawal, R.  |e author 
700 1 0 |a Berry, J.  |e author 
700 1 0 |a Chan, C.Y.  |e author 
700 1 0 |a Cohen, E.  |e author 
700 1 0 |a Diskin, C.  |e author 
700 1 0 |a Gill, P.J.  |e author 
700 1 0 |a Malik, K.  |e author 
700 1 0 |a Nelson, K.E.  |e author 
700 1 0 |a Orkin, J.  |e author 
700 1 0 |a Rashid, N.  |e author 
700 1 0 |a Thomson, J.  |e author 
773 |t Developmental Medicine and Child Neurology