Developing a comprehensive ICF core set to document health and functioning in children with Cancer in India: A preliminary study.
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BACKGROUND: This study aimed to develop a comprehensive ICF Core Set for children with cancer to facilitate the documentation of their health and functioning. Two preparatory phase studies were conducted to gather perspectives from caregivers and healthcare professionals. METHODS: Semi-structured interviews with caregivers and a cross-sectional survey with healthcare professionals were conducted to understand the challenges children face due to cancer and its treatment, as well as environmental factors impacting their functioning. Interviews were audio-recorded, transcribed verbatim, and analyzed qualitatively. The themes derived from the analysis were coded and linked to the ICF framework using Cieza linking rules. RESULTS: A comprehensive ICF Core Set comprising 156 categories was formulated by combining responses from 21 healthcare professionals and 18 caregivers. Categories were distributed across the body structure, body functions, activities/participation, and environmental factors domains. Specifically, 40 categories related to body structure, 65 to body functions, 23 to activities/participation, and 27 to environmental factors. CONCLUSION: The use of the ICF to develop the Core Set is significant as it provides a multidimensional perspective on the health and functioning of children with cancer. Incorporating intrinsic and extrinsic factors, the Core Set can assist multidisciplinary treatment teams in delivering individualized and holistic care to pediatric patients. Additionally, it can serve as a foundation for standardizing assessment tools and planning preventative and intervention strategies for this population.