Purpose Quality of life (QOL) among adolescents with neonatal brachial plexus palsy (NBPP) is an important but unexplored topic. To date, few NBPP studies use comprehensive patient-reported outcome measures, and none specifically address the adolescent population. This study explores the long-term QOL and patient expectations among adolescents with NBPP using qualitative and quantitative approaches. Methods Eighteen adolescents with residual NBPP impairment between the ages of 10 to 17 years along with their parents were included in our study. Adolescents and their parents underwent separate one hour tape-recorded semi-structured interviews, which were audio recorded and transcribed. We also collected quantitative patient outcome measures to quantify the degree of each adolescent’s functional impairment and to increase our understanding of long-term quality of life and patient expectations. Results Thirteen females and five males with a mean age of 11.6 years participated in our study. Through qualitative analysis we identified the following factors contributing to overall QOL from the patient and parent perspective: 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, with adolescents reporting slightly higher QOL than their parents. However, both adolescents and their parents report relatively modest satisfaction with their current condition and express expectations for improvement in multiple areas. Discussion Understanding patient expectations and QOL in NBPP adolescents are essential for medical decision-making and advancing care. Our study results showed that functional and aesthetic factors were responsible for the majority of observed differences in QOL among NBPP adolescents. We also found that the PODCI might be more sensitive than the CHQ in assessing patient expectations and quality of life among this patient population.

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Background Elective surgical management of neonatal brachial plexus palsy is complex, variable, and often individualized. Little is known about the medical decision-making process among adolescents with NBPP and their families faced with making complex treatment decisions. The experiences of these patients and their parents were analyzed to identify key factors in the decision-making process. Patients and Methods Eighteen adolescents with residual NBPP deficits between the ages of 10 to 17 years along with their parents were included in the present study. A qualitative research design was employed involving the use of separate one hour, in person, semi-structured interviews, which were audio recorded and transcribed. Grounded theory was applied by two independent members of the research team to identify recurrent themes and ultimately create a codebook that was then applied to the data. Results Medical decision-making among adolescents with NBPP and their families is multifaceted and individualized, comprised of both patient and system dependent factors. Four codes pertaining to the medical decision-making process were identified: 1) knowledge acquisition, 2) multidisciplinary care, 3) adolescent autonomy, and 4) patient expectations and treatment desires. Overall, parental decision-making was heavily influenced by system dependent factors, while adolescents largely based their medical decision-making on individual treatment desires to improve function and/or aesthetics. Conclusions There are many areas for improving the delivery of information and health care organization among adolescents with NBPP and their families. We recommend the development of educational interdisciplinary programs and decision aids containing evidence-based management guidelines targeted toward primary care providers and patients. We believe that a computer-based learning module may provide the best avenue to achieve maximum penetrance and convenience of information sharing.