Written by Hal Siden
RESEARCH PROJECT: Acute and persistent postoperative developmental decline in patients with cerebral palsy
Lead investigators/designated PI’s
June 13, 2018
Est. end date December 2020
Children with Cerebral Palsy (CP) often require extensive surgery due to complications arising from musculoskeletal involvement. These children’s parents and clinicians have anecdotally observed that following especially long invasive procedures (primarily orthopedic), these children sometimes experience developmental regression. The regression appears to self-resolve in most cases, but can require weeks to months. This phenomenon has not been described in the literature, or as far as we can tell, previously investigated in children with CP. We aim to explore and further describe this phenomenon by speaking to parents and exploring the narrative about their and their children’s experiences.
The purpose of this study is to explore the postoperative functional and cognitive postoperative recovery in developmentally and neurologically impaired pediatric populations.
- Understand the experience, based on parent/caregiver input, of temporary or persistent cognitive and/or functional decline in children with CP having undergone major surgical interventions.
- Develop an initial exploratory hypothesis to drive a larger program of research with both retrospective and prospective studies.
- Describe common elements of the experience of these children, including information from functional skills questionnaires and parental descriptions of pre-post ability.
Parents and caregivers will be invited to participate in an individual interview. The number of interviews conducted will be dictated by the point of saturation (estimated 5-7 participants).