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Healthâ Related Quality of Life Components in Children With Neonatal Brachial Plexus Palsy: A Qualitative Study
dc.contributor.authorChang, Kate W.‐c.
dc.contributor.authorAustin, Amy
dc.contributor.authorYeaman, Jan
dc.contributor.authorPhillips, Lauren
dc.contributor.authorKratz, Anna
dc.contributor.authorYang, Lynda J.‐s.
dc.contributor.authorCarlozzi, Noelle E.
dc.date.accessioned2019-01-15T20:23:53Z
dc.date.available2019-01-15T20:23:53Z
dc.date.issued2017-04
dc.identifier.citationChang, Kate W.‐c. ; Austin, Amy; Yeaman, Jan; Phillips, Lauren; Kratz, Anna; Yang, Lynda J.‐s. ; Carlozzi, Noelle E. (2017). "Healthâ Related Quality of Life Components in Children With Neonatal Brachial Plexus Palsy: A Qualitative Study." PM&R 9(4): 383-391.
dc.identifier.issn1934-1482
dc.identifier.issn1934-1563
dc.identifier.urihttps://hdl.handle.net/2027.42/146831
dc.description.abstractBackgroundCurrently, no published, validated patientâ reported outcome (PRO) measures of healthâ 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.ObjectiveTo evaluate important components of HRQOL for children with NBPP and identify where new PRO measures are needed.DesignEleven focus groups comprising children with NBPP (4), family members (6), and professional providers (1) to assess HRQOL.SettingBrachial plexus clinic.ParticipantsChildren with NBPP, their parents, and professional providers.Inclusion CriteriaChildren 7â 17 years old with NBPP; parents/caregivers at least 18 years of age; professionals with â ¥2 years’ experience providing NBPP clinical care; ability to read and speak English fluently.MethodsFocus group sessions were recorded, transcribed verbatim, and deidentified. Qualitative frequency analysis identified different aspects of HRQOL relevant to NBPP. This analysis expands on the groundedâ 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 Neuroâ QoL) to identify components of HRQOL where new PRO measures are needed for NBPP.Main Outcome MeasuresNot applicable.ResultsAlthough many physical, social, and emotional health domains were captured by existing PRO measures, some significant NBPPâ specific topics emerged from qualitative analysisâ functionality, sensory, physical appearance, arm/hand compensation and preference, explaining functionality/appearance to others, and selfâ esteem and body image concerns.ConclusionsDevelopment of sensitive and specific measures capturing arm/hand function and body image would improve the clinical care of patients with NBPP.Level of EvidenceNot applicable.
dc.publisherSAGE Publications, Inc
dc.publisherWiley Periodicals, Inc.
dc.titleHealthâ Related Quality of Life Components in Children With Neonatal Brachial Plexus Palsy: A Qualitative Study
dc.typeArticleen_US
dc.rights.robotsIndexNoFollow
dc.subject.hlbsecondlevelKinesiology and Sports
dc.subject.hlbtoplevelHealth Sciences
dc.description.peerreviewedPeer Reviewed
dc.contributor.affiliationumDepartment of Physical Medicine and Rehabilitation, University of Michigan, 2800 Plymouth Road, Ann Arbor, MI 48109â 2800
dc.contributor.affiliationumDepartment of Neurosurgery, University of Michigan, Ann Arbor, MI
dc.contributor.affiliationumDepartment of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI
dc.contributor.affiliationumDepartment of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI
dc.contributor.affiliationumDepartment of Neurosurgery, University of Michigan, Ann Arbor, MI
dc.contributor.affiliationotherDepartment of Psychology, Spring Arbor University, Jackson, MI
dc.contributor.affiliationotherDepartment of Psychology, Spring Arbor University, Jackson, MI
dc.description.bitstreamurlhttps://deepblue.lib.umich.edu/bitstream/2027.42/146831/1/pmr2383.pdf
dc.identifier.doi10.1016/j.pmrj.2016.08.002
dc.identifier.sourcePM&R
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dc.owningcollnameInterdisciplinary and Peer-Reviewed


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