JMIR Publications

ABSTRACT

Background Cerebral palsy (CP) is one of the most common early onset disabilities globally. The brain damage that causes CP is non-progressive, yet associated secondary conditions develop and worsen over time. Individuals with CP in Sweden, and most of the Nordic countries, are systematically followed in the quality registry and follow-up program CPUP. CPUP has improved certain aspects of the healthcare for individuals with CP and strengthened collaboration among professionals. However, there are still issues to resolve related to healthcare for this specific population. Objectives The overall objectives of the research program MOVING-ON WITH CP is to improve the healthcare processes and the delivery models for individuals with CP, and by extension improve health, quality of life, and social participation. These processes and models should be cost-effective, and distributed equally across Sweden. We will develop, implement, and evaluate real-life solutions for Swedish healthcare provision. The program also involves evaluations of existing healthcare and social insurance benefit programs and processes, with focus on inequality and health disparities. Methods The program is divided into nine projects under three themes. Theme A. Evaluation of existing healthcare is mainly performed through register studies where data from CPUP are analyzed together with national official health databases complemented by surveys and interviews. In Theme B. Equality in Healthcare and Social Insurance Programs registry studies will be combined with focus group interviews and development of new models for insurance certificates. In Theme C New Solutions and Processes in Healthcare Provision, we will create an e-Health organization that compensates for inequalities in access to healthcare and create technical equipment that improves the assessment of movement activity in people with CP. Conclusions In MOVING-ON WITH CP, many different professions together with individuals with CP and their families, will evaluate existing healthcare, create conditions for a more equal care and develop new technologies to improve the management of people with CP.