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

Catherine Diskin*, Kristina Malik, Peter J. Gill, Nada Rashid, Carol Y. Chan, Katherine E. Nelson, Joanna Thomson, Jay Berry, Rishi Agrawal, Julia Orkin, Eyal Cohen

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

2 Scopus citations

Abstract

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.

Original languageEnglish (US)
Pages (from-to)200-208
Number of pages9
JournalDevelopmental Medicine and Child Neurology
Volume64
Issue number2
DOIs
StatePublished - Feb 2022

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Developmental Neuroscience
  • Clinical Neurology

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