Article

PURPOSE: To describe a concept for prevention of secondary conditions in
individuals with chronic neuromuscular disabilities by using two Swedish
developed follow-up-programmes for cerebral palsy (CP; CPUP) and myelomeningocele
(MMC; MMCUP) respectively as examples. METHOD: This paper describes and outlines
the rationale, development and implementation of CPUP and MMCUP. RESULTS: Both
programmes are multidisciplinary longitudinal follow-up programmes that
simultaneously serve as national registries. The programmes are population-based
and set in Swedish habilitation clinics. Most children (95%) born 2000 or later
with CP are enrolled in CPUP and the recruitment of adults is underway. CPUP has
also been implemented in Norway, Denmark, Iceland, Scotland and parts of
Australia. In MMCUP, almost all children with MMC born 2007 or later participate
and individuals of all ages are now invited. The registries provide
epidemiological profiles associated with CP and MMC and platforms for
population-based research and quality of care improvement. CONCLUSIONS: Through
multidisciplinary follow-up and early detection of emerging complications
individuals with CP or MMC can receive less complex and more effective
interventions than if treatment is implemented at a later stage. Possibilities
and challenges to design, implement and continuously run multidisciplinary
secondary prevention follow-up programmes and quality registries for individuals
with CP or MMC are described and discussed. Implications for rehabilitation
Individuals with disabilities such as cerebral palsy or myelomeningocele are at
risk of developing secondary conditions. Multidisciplinary population-based
longitudinal follow-up programmes seem effective in preventing certain types of
secondary conditions.

Langue : ANGLAIS