Mark E Swanson1, Scott D Grosse, Roshni Kulkarni. 1. Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, CDC, Atlanta, Georgia 30333, USA. meswanson@cdc.gov
Abstract
CONTEXT: Young people with blood disorders face challenges in maintaining their physical health as they age. Sickle cell disease has well-documented complications in various organ systems. Increasingly, professionals, consumers, and advocates involved in blood disorders are concerned about the cumulative and ongoing effect of organ-specific complications on function and participation. EVIDENCE ACQUISITION: Publications were identified that looked at the relationship between sickle cell disease and associated impairments and restrictions in participation as defined by the International Classification of Function, Disability, and Health (ICF). EVIDENCE SYNTHESIS: This article organizes a literature review in PubMed using ICF terms that define functional limitations and participation restrictions in sickle cell disease. CONCLUSIONS: Individuals with sickle cell disease experience complications in multiple organ systems that affect related functions and, consequently, participation in community living. The effects begin early in childhood and accumulate across the life course into adulthood. Intervention research is needed to understand how contextual factors can promote optimal function and participation in the face of mounting impairments.
CONTEXT: Young people with blood disorders face challenges in maintaining their physical health as they age. Sickle cell disease has well-documented complications in various organ systems. Increasingly, professionals, consumers, and advocates involved in blood disorders are concerned about the cumulative and ongoing effect of organ-specific complications on function and participation. EVIDENCE ACQUISITION: Publications were identified that looked at the relationship between sickle cell disease and associated impairments and restrictions in participation as defined by the International Classification of Function, Disability, and Health (ICF). EVIDENCE SYNTHESIS: This article organizes a literature review in PubMed using ICF terms that define functional limitations and participation restrictions in sickle cell disease. CONCLUSIONS: Individuals with sickle cell disease experience complications in multiple organ systems that affect related functions and, consequently, participation in community living. The effects begin early in childhood and accumulate across the life course into adulthood. Intervention research is needed to understand how contextual factors can promote optimal function and participation in the face of mounting impairments.
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