The myelomeningocele follow-up program: the Swedish initiative to ensuring multidisciplinary healthcare for individuals with myelomeningocele

Abstract

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. 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.