Background: Cerebral Palsy (CP) is the most common cause of musculoskeletal disability in children and although CP is generally considered a pediatric condition most people with CP are in fact adults. The incidence of Spina Bifida (SB) in Sweden has been decreasing the last decades. However, persons with SB have a high risk of preventable severe medical complications and disability due to the condition. According to WHO, persons with disabilities are at increased risk of becoming marginalized, having difficulties accessing appropriate healthcare, and report higher levels of poor health than their peers without disabilities. CPUP originated 20 years ago when pediatric orthopedic surgeons and habilitation specialists became concerned about the high prevalence of painful hip dislocations and severe contractures in this group of children. MMCUP was started in 2012 to detect severe complications due to the condition and both registries aim to increase knowledge by gathering multiprofessional follow-up information from early childhood into adulthood. In Sweden, governmental funding during 2012-2016 has made it possible to start new and improve old National Quality Registries to secure health and welfare for persons with CP: the Cerebral Palsy Follow-Up (CPUP) and for persons with SB the Myelo Meningo Coele Follow-Up (MMCUP). Both CPUP and MMCUP are combined national quality registers and a secondary prevention follow-up programs based on clinical evidence-based guidelines. Purpose: To describe experiences, results and usefulness from the physiotherapists view in health promotion and prevention by being part of a multidisciplinary team and initiating, scaffolding and continuously running the two follow-up programs and national quality registers, CPUP respectively MMCUP. Methods: Life-long structured follow-up with multi professional web-based questionnaires and standardized outcome measures on body function, activities and participation and treatment. Results: Knowledge of natural development in CP and SB is growing and leads to evidence-based research and practice. Lessons learned will be presented and discussed. Conclusion(s): The National Quality Registries CPUP and MMCUP secure the quality of care in persons with CP and SB and increases knowledge of long-term consequences in life for persons with life-long functional disabilities. Structured follow-up at regular intervals detect deterioration in function an early stages and less invasive interventions has been used than if detected at later stages. Implications: Health promotion, prevention and early intervention are more effective than late interventions after established severe complications.
Nordmark, E., & Josenby, A. L. (2015). Life-long secondary prevention and quality registries in Cerebral Palsy and Spina Bifida. Why, when and how? Physiotherapy, 101, e1105–e1106. https://doi.org/10.1016/j.physio.2015.03.2003