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

Publication ,  Journal Article
Aravamuthan, BR; Shusterman, M; Green Snyder, L; Lemmon, ME; Bain, JM; Gross, P; For Simons Searchlight, ; Cerebral Palsy Research Network,
Published in: Dev Med Child Neurol
June 2022

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.

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Published In

Dev Med Child Neurol

DOI

EISSN

1469-8749

Publication Date

June 2022

Volume

64

Issue

6

Start / End Page

723 / 733

Location

England

Related Subject Headings

  • Surveys and Questionnaires
  • Registries
  • Pediatrics
  • Humans
  • Emotions
  • Cerebral Palsy
  • Caregivers
  • Adult
  • 52 Psychology
  • 42 Health sciences
 

Citation

APA
Chicago
ICMJE
MLA
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Aravamuthan, B. R., Shusterman, M., Green Snyder, L., Lemmon, M. E., Bain, J. M., Gross, P., … Cerebral Palsy Research Network, . (2022). Diagnostic preferences include discussion of etiology for adults with cerebral palsy and their caregivers. Dev Med Child Neurol, 64(6), 723–733. https://doi.org/10.1111/dmcn.15164
Aravamuthan, Bhooma R., Michele Shusterman, Leeanne Green Snyder, Monica E. Lemmon, Jennifer M. Bain, Paul Gross, Paul For Simons Searchlight, and Paul Cerebral Palsy Research Network. “Diagnostic preferences include discussion of etiology for adults with cerebral palsy and their caregivers.Dev Med Child Neurol 64, no. 6 (June 2022): 723–33. https://doi.org/10.1111/dmcn.15164.
Aravamuthan BR, Shusterman M, Green Snyder L, Lemmon ME, Bain JM, Gross P, et al. Diagnostic preferences include discussion of etiology for adults with cerebral palsy and their caregivers. Dev Med Child Neurol. 2022 Jun;64(6):723–33.
Aravamuthan, Bhooma R., et al. “Diagnostic preferences include discussion of etiology for adults with cerebral palsy and their caregivers.Dev Med Child Neurol, vol. 64, no. 6, June 2022, pp. 723–33. Pubmed, doi:10.1111/dmcn.15164.
Aravamuthan BR, Shusterman M, Green Snyder L, Lemmon ME, Bain JM, Gross P, For Simons Searchlight, Cerebral Palsy Research Network. Diagnostic preferences include discussion of etiology for adults with cerebral palsy and their caregivers. Dev Med Child Neurol. 2022 Jun;64(6):723–733.
Journal cover image

Published In

Dev Med Child Neurol

DOI

EISSN

1469-8749

Publication Date

June 2022

Volume

64

Issue

6

Start / End Page

723 / 733

Location

England

Related Subject Headings

  • Surveys and Questionnaires
  • Registries
  • Pediatrics
  • Humans
  • Emotions
  • Cerebral Palsy
  • Caregivers
  • Adult
  • 52 Psychology
  • 42 Health sciences