title: Health-Related Quality of Life Components in Children With Neonatal Brachial Plexus Palsy: A Qualitative Study.
abstract: 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.
  
  
  METHODS
  Eleven focus groups comprising children with NBPP (4), family members (6), and professional providers (1) to assess HRQOL.
  
  
  METHODS
  Brachial plexus clinic.
  
  
  METHODS
  Children with NBPP, their parents, and professional providers.
  
  
  METHODS
  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.
  
  
  METHODS
  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.
  
  
  METHODS
  Not applicable.
authors: Department of Neurosurgery, University of Michigan, Ann Arbor, MI(∗).
authors: Kate W-C
authors: KW
authors: Chang
authors: Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI(†).
authors: Amy
authors: A
authors: Austin
authors: Department of Psychology, Spring Arbor University, Jackson, MI(‡).
authors: Jan
authors: J
authors: Yeaman
authors: Department of Psychology, Spring Arbor University, Jackson, MI(§).
authors: Lauren
authors: L
authors: Phillips
authors: Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI(¶).
authors: Anna
authors: A
authors: Kratz
authors: Department of Neurosurgery, University of Michigan, Ann Arbor, MI(#).
authors: Lynda J-S
authors: LJ
authors: Yang
authors: Department of Physical Medicine and Rehabilitation, University of Michigan, 2800 Plymouth Road, Ann Arbor, MI 48109-2800(∗∗). Electronic address: carlozzi@med.umich.edu.
authors: Noelle E
authors: NE
authors: Carlozzi
mesh_terms: D000222:Adaptation, Physiological; D000223:Adaptation, Psychological; D000293:Adolescent; D000553:Ambulatory Care / Q000379:methods; D001828:Body Image; D020516:Brachial Plexus Neuropathies / Q000175:diagnosis* / Q000523:psychology / Q000534:rehabilitation*; D002648:Child; D005260:Female; D017144:Focus Groups; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D010348:Patient Care Team / Q000458:organization & administration; D026741:Physical Therapy Modalities; D036301:Qualitative Research; D011788:Quality of Life; D020127:Recovery of Function; D012649:Self Concept; D012720:Severity of Illness Index; D018434:Sickness Impact Profile; D016896:Treatment Outcome