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... Show moreTo 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 health-care use. Two hundred twenty-eight participants reported current information needs of whom 23 were discharged early. HCU and information needs of Dutch children with NBPP remains considerable even in children who were discharged. Stricter follow-up and information provision for these patients is needed. Show less
Sarac, C.; Duijnisveld, B.J.; Weide, A. van der; Schoones, J.; Malessy, M.J.A.; Nelissen, R.G.H.H.; Vlieland, T.P.M.V. 2015
BACKGROUND: Symptoms of a neonatal brachial plexus palsy (NBPP) can vary widely among individuals and numerous clinical studies have been performed to identify the natural history and to improve... Show moreBACKGROUND: Symptoms of a neonatal brachial plexus palsy (NBPP) can vary widely among individuals and numerous clinical studies have been performed to identify the natural history and to improve treatment. The aim of this study was to identify and describe all outcome measures used in clinical studies on patients with an NBPP and categorize these outcome measures according to the International Classification of Functioning, Disability and Health (ICF).METHOD: Electronic searches of different databases were carried out. All clinical studies describing one or more outcomes of NBPP were selected. Data on outcome measures was systematically extracted and the contents were analyzed and linked to the ICF.RESULTS: A total of 217 full texts were selected and 59 different outcome measures were identified. The 5 most frequently used outcome measures included range of motion of the shoulder (n = 166 studies, 76%), range of motion of the elbow (n = 87 studies, 40%), the Mallet scale (n = 66 studies, 30%), Magnetic Resonance Imaging (n = 37 studies, 17%) and the Medical Research Council motor grading scale (n = 31 studies, 14%). Assessments related to Body functions and Structures were most frequent, whereas assessments associated with Activities and Participation and Environmental Factors were relatively uncommon.CONCLUSION: There was a high variability among the outcome measures used, with measures within the ICF component Body Functions being most common. These results underscore the need for the development and usage of outcome measures representing all domains of health status in patients with NBPP. Show less
