CP CHILD B - sporedata/researchdesigneR GitHub Wiki

General description

The CP-CHILD-B dataset refers to data collected using the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) instrument, specifically for children with Cerebral Palsy (CP). This tool is widely used to assess health-related quality of life (HRQOL) in children with severe disabilities due to CP. The dataset includes responses to questions aimed at measuring the physical, emotional, and social aspects of the child’s well-being as reported by their caregivers.

The CP-CHILD-B dataset is designed to capture the caregiver’s perspective on the child’s health-related quality of life across various domains and is specifically designed for children with moderate to severe cerebral palsy who may have limited mobility and other complex health needs.

Variables

  1. Demographic Data - Child's Age; Gender:; Cerebral Palsy Classification.
  2. Activity Limitations - ADL Scores; Mobility Scores.
  3. Comfort & Emotional Well-being - Pain Scores; Emotional Scores.
  4. Social Interaction - Communication Ability; Social Engagement Scores.
  5. Health-Related Quality of Life (HRQOL) - General Health Perception; Quality of Life Scores.
  6. Caregiver Burden - Caregiver Priorities; Time and Effort for Caregiving.

Data Categories

  • Comfort and Emotions: Assesses the child’s emotional well-being and comfort levels, including pain, discomfort, and feelings of frustration.
  • Activities of Daily Living (ADL): Includes questions on the child’s ability to perform daily tasks like eating, dressing, bathing, and mobility.
  • Positioning, Transfer, and Mobility: Focuses on the child’s physical functioning, such as the ability to sit, move between positions, and overall mobility.
  • Health and Overall Quality of Life: Measures general health perception and quality of life from the caregiver’s point of view.
  • Communication and Social Interaction: Evaluates the child’s ability to communicate and interact socially with peers, family, and caregivers.

Related publications

Data access

For more information on the CP-CHILD-B dataset, visit https://figshare.com/articles/dataset/CP-CHILD_zip/12554042?file=23383508