Health-care use and information needs of children with neonatal brachial plexus palsy: A cross-sectional survey among 465 Dutch patients

To investigate health-care use (HCU) and information needs of children aged 0–18 years with neonatal brachial plexus palsy (NBPP), a cross-sectional study was performed. Patients and/or parents seen in our NBPP clinic were invited to complete a survey comprising questions on HCU due to NBPP and current information needs. Outcomes were described for three age-groups (0–1/2–9/10–18 years), based on follow-up status (early/late/no-discharge). Four hundred sixty-five parents/patients participated (59 in the 0–1, 226 in the 2–9, and 180 in the 10–18-year group). Two hundred ninety-three patients had C5–C6 lesions, 193 were discharged from follow-up, 83 of whom categorized as ‘early discharged’ (<1 year of age). Over the past year, 198 patients had contact with the expert team (49 in the 0–1, 81 in the 2–9, and 68 in the 10–18-year group) and 288 with at least one other health-care professional (53 in the 0–1, 133 in the 2–9, and 102 in the 10–18-year group). Of the 83 patients discharged early, 34 reported hea...