Medical Decision-Making among Adolescents with Neonatal Brachial Plexus Palsy and Their Families

Abstract

Background Elective surgical management of neonatal brachial plexus palsy is complex, variable, and often individualized. Little is known about the medical decision-making process among adolescents with NBPP and their families faced with making complex treatment decisions. The experiences of these patients and their parents were analyzed to identify key factors in the decision-making process. Patients and Methods Eighteen adolescents with residual NBPP deficits between the ages of 10 to 17 years along with their parents were included in the present study. A qualitative research design was employed involving the use of separate one hour, in person, semi-structured interviews, which were audio recorded and transcribed. Grounded theory was applied by two independent members of the research team to identify recurrent themes and ultimately create a codebook that was then applied to the data. Results Medical decision-making among adolescents with NBPP and their families is multifaceted and individualized, comprised of both patient and system dependent factors. Four codes pertaining to the medical decision-making process were identified: 1) knowledge acquisition, 2) multidisciplinary care, 3) adolescent autonomy, and 4) patient expectations and treatment desires. Overall, parental decision-making was heavily influenced by system dependent factors, while adolescents largely based their medical decision-making on individual treatment desires to improve function and/or aesthetics. Conclusions There are many areas for improving the delivery of information and health care organization among adolescents with NBPP and their families. We recommend the development of educational interdisciplinary programs and decision aids containing evidence-based management guidelines targeted toward primary care providers and patients. We believe that a computer-based learning module may provide the best avenue to achieve maximum penetrance and convenience of information sharing.

Medical treatment decision making after total avulsion brachial plexus injury: a qualitative study

“…4,15,31,32 Grounded theory-based investigation of medical decision making among adolescents with neonatal BPIs, patients with tetraplegia, and patients with chronic pain included 18, 22, and 13 subjects, respectively. 10,13,35 In the present study we screened 163 patients with traumatic BPIs that had been evaluated by 2 surgeons at a large academic health center between 2002 and 2012 ( Fig. 1).…”

A systematic review of evaluation methods for neonatal brachial plexus palsy

“…34 The comprehensive evaluation of a patient with NBPP may comprise a combination of evaluation tools. For classification of the condition of NBPP, the Narakas Classification Scale is widely used and provides a solid basis for 45 With consideration given to patient age group, time required to administer the tool, validation of the measure for NBPP/other medical conditions, and sensitivity for measurement of change, studies that address the psychosocial impact of NBPP 50 and the use of patient focus groups 10,11,55 may provide a basis for the development of future patient-reported outcome measures.…”

Obstetrical brachial plexus injury: burden in a publicly funded, universal healthcare system

“…44 However, primary care providers for newborns lack the familiarity and expertise to educate guardians and monitor for patient recovery. 39,60 Recovery is often overestimated, and residual impairment is not characterized. 18,55 Pediatric peripheral nerve management is a highly specialized treatment area, with physical therapy and operative resources concentrated at multidisciplinary centers.…”

“…The timing of referral to a multidisciplinary center is important, 60 as a referral provides coordinated education for guardians and assessment by specialized physicians and therapists. One month was chosen as a timeframe for a designation of "good."…”