Abstract
BackgroundCerebral palsy (CP) is one of the most common early onset disabilities globally. The causative brain damage in CP is nonprogressive, yet secondary conditions develop and worsen over time. Individuals with CP in Sweden and most of the Nordic countries are systematically followed in the national registry and follow-up program entitled the Cerebral Palsy Follow-Up Program (CPUP). CPUP has improved certain aspects of health care for individuals with CP and strengthened collaboration among professionals. However, there are still issues to resolve regarding health care for this specific population.ObjectiveThe overall objectives of the research program MOVING ON WITH CP are to (1) improve the health care processes and delivery models; (2) develop, implement, and evaluate real-life solutions for Swedish health care provision; and (3) evaluate existing health care and social insurance benefit programs and processes in the context of CP.MethodsMOVING ON WITH CP comprises 9 projects within 3 themes. Evaluation of Existing Health Care (Theme A) consists of registry studies where data from CPUP will be merged with national official health databases, complemented by survey and interview data. In Equality in Health Care and Social Insurance (Theme B), mixed methods studies and registry studies will be complemented with focus group interviews to inform the development of new processes to apply for benefits. In New Solutions and Processes in Health Care Provision (Theme C), an eHealth (electronic health) procedure will be developed and tested to facilitate access to specialized health care, and equipment that improves the assessment of movement activity in individuals with CP will be developed.ResultsThe individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained.ConclusionsIn this 6-year multidisciplinary program, professionals from the fields of medicine, social sciences, health sciences, and engineering, in collaboration with individuals with CP and their families, will evaluate existing health care, create conditions for a more equal health care, and develop new technologies to improve the health care management of people with CP.International Registered Report Identifier (IRRID)DERR1-10.2196/13883
Highlights
BackgroundAll children should have the right to health and quality of life [1], yet children with disabilities have impairments, putting them at risk for reduced participation, limited involvement in everyday activities, and reduced quality of life [2,3]
Evaluation of Existing Health Care (Theme A) consists of registry studies where data from Cerebral Palsy Follow-Up Program (CPUP) will be merged with national official health databases, complemented by survey and interview data
In New Solutions and Processes in Health Care Provision (Theme C), an eHealth procedure will be developed and tested to facilitate access to specialized health care, and equipment that improves the assessment of movement activity in individuals with Cerebral palsy (CP) will be developed
Summary
BackgroundAll children should have the right to health and quality of life [1], yet children with disabilities have impairments, putting them at risk for reduced participation, limited involvement in everyday activities, and reduced quality of life [2,3]. Cerebral palsy (CP) is one of the most common early onset disabilities with a prevalence of 2 to 3 per 1000 live births [4,5]. The brain damage that causes CP is nonprogressive, but associated secondary conditions, by definition preventable [8], develop and deteriorate over time. Since 1994, children and adolescents with CP in the southern regions of Sweden have been systematically enrolled in a follow-up program called the Cerebral Palsy Follow-Up Program (CPUP). Cerebral palsy (CP) is one of the most common early onset disabilities globally. Individuals with CP in Sweden and most of the Nordic countries are systematically followed in the national registry and follow-up program entitled the Cerebral Palsy Follow-Up Program (CPUP). There are still issues to resolve regarding health care for this specific population
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