Social Participation After Childhood Craniopharyngioma

Overview

Craniopharyngioma is a rare, benign central nervous system tumor, which may be a source of multiple complications, from endocrinology to vision, neurology and neurocognitive functions. This morbidity can lead to reduced participation in life activities, as described in the International Classification of Functioning, Disability, and Health (ICF). The primary objective of this study is to measure participation in life activities in a population of children affected by childhood craniopharyngioma, using the assessement of life habits questionnaire (LIFE-H questionnaire), validated as a social participation measurement tool in various pediatric disabilities.

Study Type

  • Study Type: Observational
  • Study Design
    • Time Perspective: Cross-Sectional
  • Study Primary Completion Date: July 1, 2014

Interventions

  • Other: observational study so no intervention
    • observational study, so no intervention

Clinical Trial Outcome Measures

Primary Measures

  • LIFE-H questionnaire (Assessment of Life Habits)
    • Time Frame: At maximum 6 months after inclusion
    • The LIFE-H questionnaire is sent by mail to parents’ patient. For parents who do not return the questionnaire completed, a telephone call is made and the LIFE-H questionnaire is completed by phone.

Participating in This Clinical Trial

Inclusion Criteria

  • Children with a craniopharyngioma Exclusion Criteria:

  • None

Gender Eligibility: All

Minimum Age: 1 Day

Maximum Age: 18 Years

Are Healthy Volunteers Accepted: No

Investigator Details

  • Lead Sponsor
    • BERTHILLIER Julien
  • Provider of Information About this Clinical Study
    • Sponsor-Investigator: BERTHILLIER Julien, Project Manager – Hospices Civils de Lyon

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