Abstract
BackgroundTo test the validity and reliability of scales intended to measure activity limitations faced by children with chronic illnesses living in the community. The scales were based on information provided by caregivers to service program personnel almost exclusively trained as social workers. The items used to measure activity limitations were interRAI items supplemented so that they were more applicable to activity limitations in children with chronic illnesses. In addition, these analyses may shed light on the possibility of gathering functional information that can span the life course as well as spanning different care settings.MethodsAnalyses included testing the internal consistency, predictive, concurrent, discriminant and construct validity of two activity limitation scales. The scales were developed using assessment data gathered in the United States of America (USA) from over 2,700 assessments of children aged 4 to 20 receiving Medicaid Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services, specifically Personal Care Services to assist children in overcoming activity limitations. The Medicaid program in the USA pays for health care services provided to children in low-income households. Data were collected in a single, large state in the southwestern USA in late 2008 and early 2009. A similar sample of children was assessed in 2010, and the analyses were replicated using this sample.ResultsThe two scales exhibited excellent internal consistency. Evidence on the concurrent, predictive, discriminant, and construct validity of the proposed scales was strong. Quite importantly, scale scores were not correlated with (confounded with) a child's developmental stage or age. The results for these scales and items were consistent across the two independent samples.ConclusionsUnpaid caregivers, usually parents, can provide assessors lacking either medical or nursing training with reliable and valid information on the activity limitations of children. One can summarize these data in scales that are both internally consistent and valid. Researchers and clinicians can use supplemented interRAI items to provide guidance for professionals and programs serving children, as well as older persons. This research emphasizes the importance of developing medical information systems that allow one to integrate information not only across care settings but also across an individual's life course.
Highlights
To test the validity and reliability of scales intended to measure activity limitations faced by children with chronic illnesses living in the community
Medicaid in the United States of America (USA) uses a combination of state and federal funds to pay for health services provided to low-income families, persons with disabilities, and older persons needing long-term care
Almost one-half of them had an intellectual disability of some type; one-quarter had attention deficit hyperactivity disorder (ADHD); over one-quarter had a seizure disorder
Summary
To test the validity and reliability of scales intended to measure activity limitations faced by children with chronic illnesses living in the community. In 2009, almost 3 million children in the large, southwestern state of Texas were eligible for EPSDT services [2] Health care for these children accounted for Medicaid expenditures of approximately US$1.8 billion [3]. The bulk of these expenditures were for the periodic examinations required for all EPSDT participants [4]. Among those in Texas receiving EPSDT services, a small but important proportion are children with chronic health problems who receive care at home. For all children receiving home-based Medicaid services, the average annual expenditure for those home-based services was US $3,499; for those receiving PCS, the average annual bill for home-based services was US$23,469 [5]
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