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Introduction: Myelomeningocele (MMC) is a congenital birth defect that occurs in the first few weeks of pregnancy. The condition is complex, and many body systems are affected simultaneously, resulting in a variety of urological, neurological, and musculoskeletal complications. Comorbidities and secondary conditions are frequent and wide-ranging, and can substantially affect quality of life and social involvement. Most individuals with MMC also have hydrocephalus, which has been associated with difficulties related to executive function, such as planning, initiating, and the execution of tasks. Short description of practice change implemented: In Sweden, we are currently implementing MMCUP, which is population-based follow-up program and national quality of care registry. Aim and theory of change: MMC requires coordinated multidisciplinary care. Numerous professions are involved such as urologists, urotherapists, nurses, neurosurgeons, neurologists, orthopedic surgeons, physical therapists, occupational therapists, and psychologists. Although the pediatric healthcare for this population tends to be coordinated, there are well-known obstacles for adults, and transition from pediatric to adult healthcare is challenging. Well-established difficulties related to executive functions make it difficult for these individuals to coordinate their own care. MMCUP is a system and tool to enable follow-up care throughout the lifespan for individuals with MMC. Targeted population and stakeholders: Children and adults with a diagnosis of MMC, their families, and healthcare practitioners. Timeline: The work to develop MMCUP has been ongoing since 2004. The program officially started in 2012. Individuals of all ages are welcome to participate, but the total population of those born 2007 or later are prioritized Highlights: Currently, 570 individuals are enrolled. In addition to being a tool to organize and structure healthcare, MMCUP provides a database for research. Sustainability: Buy-in from supervisors is important. There will rarely be extra funds to sustain a program over time, and it is therefore important to integrate the program to become part of regular healthcare. Transferability: The program can be transferred to different diagnoses and contexts. However, it must be modified to fit new contexts. Conclusions (comprising key findings): To date, 98% of all children with diagnosis of MMC born 2007-2017 and 99% of adolescents and young adults with MMC born1998-2001 and residing in Sweden in 2017 are followed in MMCUP. All 7 (100%) regional hospitals and 18 of 21 (86%) of the habilitation units participate. 287 professionals are currently involved with MMCUP in Sweden. Discussions: The goals of MCUP are (1) to prevent deterioration of function and to prevent the development of secondary conditions, (2) to identify effective methods of treatment, and (3) to ensure high and equal standard of care across Sweden for individuals with MMC. Many of the professionals who have dedicated their careers to this population are retiring, and it is of utmost important to engage and train the next generation of researchers and clinicians interested in MMC. Lessons learned: Implementation takes time. Professionals might be skeptical to try new ways. In particular, if there is a fear that it might require more work. It is crucial to involve users and patients. |
