Diagnostic preferences include discussion of etiology for adults with cerebral palsy and their caregivers.

Journal Article (Journal Article)

Aim

To determine the views of individuals with cerebral palsy (CP) and their caregivers (CP community members) about carrying a CP diagnosis, an etiological diagnosis, or both diagnoses together.

Method

We surveyed CP community members across two registries querying their views on carrying a CP diagnosis, one type of etiological 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), most (75%) valued knowing the cause of their CP. Of those with a diagnostic preference, most preferred carrying both CP and etiological diagnoses together (68%). When compared with carrying an etiological 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, χ2 test).

Interpretation

Most CP community members surveyed want to know the cause of their CP and would prefer carrying both CP and etiological diagnoses together. Clinical practice should evolve to meet these community needs.

Full Text

Duke Authors

Cited Authors

  • Aravamuthan, BR; Shusterman, M; Green Snyder, L; Lemmon, ME; Bain, JM; Gross, P; For Simons Searchlight, ; Cerebral Palsy Research Network,

Published Date

  • June 2022

Published In

Volume / Issue

  • 64 / 6

Start / End Page

  • 723 - 733

PubMed ID

  • 35092695

Electronic International Standard Serial Number (EISSN)

  • 1469-8749

International Standard Serial Number (ISSN)

  • 0012-1622

Digital Object Identifier (DOI)

  • 10.1111/dmcn.15164

Language

  • eng