Shared Decision Making in Cerebral Palsy through Goal-based Patient Reported Outcome Measures

Patients, caregivers and parents are not always satisfied with the outcome of a recommended therapy or surgery because the expectations of doctors, patients, caregivers and parents differ.

Initial Observations

  • From a doctor’s/hospital’s perspective a procedure may be a success, but if it leaves the patient and caregiver unhappy, it wasn’t a success.
  • There are existing patient priority-informed outcome measures (called CPCHILD, GOAL, CPCHECKList).

Core Questions

  • What is the current state of shared decision making among parents/caregivers of children with cerebral palsy?
  • What is the patient and the parent perspective of the effectiveness and outcome of the interventions?
  • Can existing data collected from various questionnaires be used to determine the perception of shared decision making by parents/caregivers using the Shared Decision Making Questionnaire?

Unni G. Narayanan, MBBS, MSc, FRCS(C); Laurie Glader, MD; Paul Gross; Darcy Fehlings MD, MSc, FRCP(C); Herbert Kerr Graham, MD, FRCS; Garey Noritz, MD; George Ibrahim, MD, PhD; Pamela Jane Thomason, PT; Brandon George Rocque MD