Health-related quality of life and caregiver burden after hip reconstruction and spinal fusion in children with spastic cerebral palsy Article Summary
Title: Health-related quality of life and caregiver burden after hip reconstruction and spinal fusion in children with spastic cerebral palsy Purpose: The purpose of this study is to determine how health-related quality of life (HRQoL) and caregiver burden is effected following a hip reconstruction or spinal fusion in non-ambulatory children with spastic cerebral palsy. Population: The study population included children with CP in GMFCS levels IV and V and their respective parent/caregiver. A total of 69 participants were studied, with 43 undergoing hip reconstruction and 26 undergoing spinal fusion. 40 were male and 29 were female with the mean age being 11y 6mo and ranging from 3y 10mo to 20y 7mo. The average of age of caregivers for children of hip surgery were 40y 10mo and for spinal surgery was 45y 5mo. Methods: A prospective, longitudinal study was performed over a course of 5 years and determining the…
Read MoreAssessment of Caregiver Experience with Neuromuscular Disease (ACEND) Article Summary
Title: Development and Initial Validation of the Assessment of Caregiver Experience with Neuromuscular Disease 1 Reference: Matsumoto H, Clayton-Krasinski DA, Klinge SA, et al. Development and Initial Validation of the Assessment of Caregiver Experience With Neuromuscular Disease. J Pediatr Orthop. 2011;31(3):284-292. doi:10.1097/BPO.0b013e31820fc522 Purpose: The purpose of this study was to present the development of the ACEND and the initial validation of this outcome measure’s ability to assess the effects of neuromuscular diseases and orthopedic interventions on caregivers. Study Population: The participants in the development of the ACEND included 60 patients with varying neuromuscular disease (NMD) and their parents. Some of the diagnoses included in this study were CP, spinal muscular atrophy, Duchene muscular dystrophy, dystonia, and others. In the second part of the study, initial validation of the ACEND, a different 46 patients with varying NMD and their respective caregivers were enrolled. Patients with non-English speaking caregivers…
Read MoreAssessment of Caregiver Experience with Neuromuscular Disease (ACEND)
Title: Evaluation of assessment of caregiver experience with neuromuscular disease: reliability and responsiveness of a new caregiver-reported outcome measure in patients with cerebral palsy. Submitted Dec 28, 2019. Accepted for publication Jun 29,2020. Journal: Translational Pediatrics, Vol 9, No 4 August 2020 Author(s):Nanfang Xu, Hiroko Matsumoto, Joshua Hyman, Benjamin Roye, Heakyung Kim, David P. Roye Jr Source: AME Publishing Company Address: Rm C, 16/F, Kings Wing Plaza 1, No. 3 On Kwan Street, Shatin, NT, Hong Kong Costs: Could not be found Equipment needed: pen and paper Purpose: To assess caregiver impact and quality of life in caregivers of children with a neuromuscular disease. Type of Test: Questionnaire – 41 items, with 2 domains. Domain 1: Physical Impact Domain 2: Caregiver Impact Target Population and Ages: Designed to assess caregivers of children with disabilities undergoing orthopedic surgery. It is now validated to assess caregivers of children with cerebral palsy. A study of ACEND development and…
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