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.