Pink and white publication of ‘Research CP -- Setting a Patient-Centered Research Agenda for Cerebral Palsy’

Diagnostic preferences amongst cerebral palsy community members: a cerebral palsy diagnosis should be accompanied by description of its etiology
Developmental Medicine and Child Neurology, Bhooma R. Aravamuthan MD DPhil, Michele Shusterman, LeeAnne Green Snyder PhD, Monica E. Lemmon MD, Jennifer M. Bain MD PhD, Paul Gross BA For the Simons Searchlight Foundation, For the Cerebral Palsy Research Network
January 29, 2022

Aim: To determine the views of people with cerebral palsy (CP) and their caregivers regarding carrying a CP diagnosis, an etiologic diagnosis, or both diagnoses together.

Methods: We surveyed people with CP and their caregivers across two registries querying their views on carrying a CP diagnosis, one type of etiologic diagnosis (specifically, a genetic diagnosis), or both. Open-ended responses were analyzed using a conventional content analysis approach.

Results: Of 197 respondents (108 adults with CP and 89 caregivers), the majority (75%) valued knowing the cause of their CP. Of those with a diagnostic preference, the majority preferred carrying both CP and etiologic diagnoses together (68%). When compared to carrying an etiologic diagnosis alone, significantly more respondents felt a CP diagnosis helped anticipate symptom evolution (84% vs 54%), explain symptoms to others (86% vs 48%), access services (86% vs 48%), and join support communities (78% vs 50%) (p<0.01, Chi-square).

Discussion: The majority of CP community members surveyed want to know the cause of their CP and would prefer carrying both CP and etiologic diagnoses together. Clinical practice should evolve to meet these community needs.

What this study adds:

  • Most CP community members value knowing their CP etiology
  • Most community members with diagnostic preferences desire both etiologic and CP diagnoses

The information from this page appears in our free and downloadable cerebral palsy tool kit.