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Health-Related Quality of Life Components in Children With Neonatal Brachial Plexus Palsy: A Qualitative Study.
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.
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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