Health-care use and information needs of children with neonatal brachial plexus palsy: A cross-sectional survey among 465 Dutch patients.
Menno van der Holst, Duco Steenbeek, Willem Pondaag and 2 others
PMID 30590948WHAT IT FOUND
Families of 465 children with neonatal brachial plexus palsy reported ongoing health-care use and information needs, even after discharge.
Physical therapists were the most contacted professionals, and 84 had received contradictory information.
Key findings
01Since birth, all patients had contact with at least 1 health-care professional in addition to the NBPP expert team, and 278 had been admitted to hospital for NBPP.
02In the past 12 months, 198 patients had contact with the expert team and 288 had contact with at least one additional health-care professional; the physical therapist was the most frequently mentioned professional.
03316 respondents had sought information about NBPP, but only 228 had found what they were looking for, and 84 had received contradictory information.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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What it does not show
This was a survey at a single Dutch center, so the care pattern may not match other countries or clinics. It measured how many professionals were contacted, not how many visits were made or what happened at those visits. Answers were self-reported and some depended on memory of care since birth, which can be inaccurate. The study could not show that more health-care use improved quality of life or caused lower quality of life; it only found associations. Many patients were referred to a tertiary expert center for severe lesions, so they may not represent all children with NBPP.
Declared interests
The authors declared no potential conflicts of interest and received no financial support for the research, authorship or publication.
The easy way to misread this
Do not conclude that early discharge means no further need for care or information. In the early discharge subgroup, 34 patients had contacted at least one health-care professional in the past 12 months, and information needs were reported across follow-up groups.