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Published on: December 19, 2019
Health-Related Quality of Life Components in Children With Neonatal Brachial Plexus Palsy: A Qualitative Study
Kate W-C Chang1, Amy Austin2, Jan Yeaman3
1Department of Neurosurgery, University of Michigan, Ann Arbor, MI(∗).
Insights
Validated patient-reported outcome measures are needed for neonatal brachial plexus palsy (NBPP) to capture arm/hand function and body image concerns. Current measures do not fully address the HRQOL needs of children with NBPP.
Area of Science:
- Pediatric Orthopedics
- Rehabilitation Medicine
- Quality of Life Research
Background:
- Neonatal brachial plexus palsy (NBPP) is a perinatal condition causing arm paralysis and sensory loss.
- Existing measures for NBPP do not comprehensively assess health-related quality of life (HRQOL).
- There is a lack of validated patient-reported outcome (PRO) measures for NBPP.
Purpose of the Study:
- To identify key HRQOL components for children with NBPP.
- To determine the need for new PRO measures in NBPP care.
Main Methods:
- Eleven focus groups were conducted with children (4), family members (6), and providers (1) with NBPP.
- Qualitative frequency analysis and grounded-theory approaches were used to analyze HRQOL aspects.
- The identified HRQOL domains were compared to existing PRO measures (PROMIS, Neuro-QoL).
Main Results:
- Existing PRO measures captured many physical, social, and emotional domains.
- NBPP-specific themes emerged: functionality, sensation, physical appearance, compensation/preference, explaining issues, self-esteem, and body image.
- Gaps were identified in current PRO measures for NBPP.
Conclusions:
- New PRO measures are needed to capture arm/hand function and body image in NBPP.
- Developing sensitive and specific measures will enhance clinical care for NBPP patients.
Background:
Currently, no published, validated patient-reported outcome (PRO) measures of health-related quality of life (HRQOL) exist for use with neonatal brachial plexus palsy (NBPP). NBPP is a debilitating condition that occurs during the perinatal period, resulting in paralysis/paresis and loss of sensation in the affected arm. Commonly used NBPP measures are not comprehensive and do not fully account for clinically meaningful changes in function or progression of the disorder.
Objective:
To evaluate important components of HRQOL for children with NBPP and identify where new PRO measures are needed.
Design:
Eleven focus groups comprising children with NBPP (4), family members (6), and professional providers (1) to assess HRQOL.
Setting:
Brachial plexus clinic.
Participants:
Children with NBPP, their parents, and professional providers.
Inclusion Criteria:
Children 7-17 years old with NBPP; parents/caregivers at least 18 years of age; professionals with ≥2 years' experience providing NBPP clinical care; ability to read and speak English fluently.
Methods:
Focus group sessions were recorded, transcribed verbatim, and deidentified. Qualitative frequency analysis identified different aspects of HRQOL relevant to NBPP. This analysis expands on the grounded-theory approach to qualitative analysis, including development of a domain framework, open and axial coding, selective coding, and descriptive analysis. The resulting HRQOL domain framework (and frequency analysis) was then compared to the domain framework for existing PRO measures (PROMIS and Neuro-QoL) to identify components of HRQOL where new PRO measures are needed for NBPP.
Main Outcome Measures:
Not applicable.
Results:
Although many physical, social, and emotional health domains were captured by existing PRO measures, some significant NBPP-specific topics emerged from qualitative analysis-functionality, sensory, physical appearance, arm/hand compensation and preference, explaining functionality/appearance to others, and self-esteem and body image concerns.
Conclusions:
Development of sensitive and specific measures capturing arm/hand function and body image would improve the clinical care of patients with NBPP.
Level Of Evidence:
Not applicable.
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