Research priorities for children with neurological impairment and medical complexity in high-income countries.
Catherine Diskin, Kristina Malik, Peter J Gill and 8 others
PMID 34462917WHAT IT FOUND
Experts and families ranked behavior, feeding tolerance, tone, dysautonomia, irritability and pain, sleep, aspiration and mental health as priority research questions.
These are evidence gaps, not proven treatments.
Key findings
01Six topics were common to clinician and caregiver panels: behavior, sleep, aspiration, irritability and pain, feeding tolerance and child mental health.
02Clinicians also prioritized tone, polypharmacy, dysautonomia and chronic lung disease, while caregivers also prioritized acute respiratory infections, enteral feeding tubes, infection control, nutrition and growth.
03Round 3 produced a top 10 list of research questions covering seven of nine clinical topic areas, excluding behavior and polypharmacy.
STILL TO COME
How it was doneWhat they found
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What it does not show
This is a research agenda, not a study of whether any treatment helps. Family caregiver input was small and uneven: 12 caregivers participated, all were mothers from Canada or Ireland, and half dropped out before round 2. Caregivers were excluded from later ranking rounds, only one was on the steering committee, and there was no youth voice, so family priorities may be underrepresented. Therapists, social workers and nurses who are not nurse practitioners were not included, so questions important to non-medical clinicians may be missing. All family caregivers and all but one clinician were from high-income countries, so the agenda may not fit low- and middle-income settings. Some topics overlap, such as aspiration and lower respiratory tract infection, and some questions are hard to frame clearly. The final list depends on a steering committee's judgments and a particular group of experts, so another panel might choose different priorities.
Declared interests
No conflicts were declared. The work was funded by the Canadian Institutes of Health Research.
The easy way to misread this
Do not read the top 10 list as evidence that any treatment works. The study only ranked what clinicians and families want researched, and it did not test interventions.