Understanding quality of life and patient expectations among adolescents with neonatal brachial plexus palsy: a qualitative and quantitative pilot study.

ABSTRACT

PURPOSE: To explore the quality of life (QOL) and patient expectations among adolescents with neonatal brachial plexus palsy (NBPP)and their parents using qualitative and quantitative approaches. METHODS: A total of 18 adolescents (10-17 y) with residual NBPP impairment and their parents under went separate 1-hour tape-recorded semistructured interviews. We also collected quantitative physical examination measures and patient-rated outcome scores, specifically the Pediatric Outcomes Data Collection Instrument and the Child Health Questionnaire, to quantify the severity of each adolescent's functional deficit and increase our understanding of QOL and patient expectations. RESULTS: Through qualitative analysis, we identified several patient- and system-dependent factors contributing to QOL, such as social impact and peer acceptance, emotional adjustment,aesthetic concerns and body image, functional limitations, physical and occupational therapy, finances, pain, and family dynamics. Despite residual impairment, most adolescents and their parents reported a good overall QOL according to quantitative outcome measures. Our study results showed that functional and aesthetic factors were responsible for most observed differences in QOL among NBPP adolescents. We also found that the Pediatric Outcomes Data Collection Instrument might be more sensitive than the Child Health Questionnaire in assessing patient expectations and QOL among this patient population. CONCLUSIONS: Understanding patient expectations and QOL in NBPP adolescents is essential for medical decision making and advancing care. Physical examination measurements alone may not be sufficient for measuring outcome, and knowledge regarding environmental factors and family dynamics is important for clinicians to consider when counseling families of children with NBPP and improving overall outcome. TYPE OF STUDY/LEVEL OF EVIDENCE Prognostic IV.