title: A combined surveillance program and quality register improves management of childhood disability.
abstract: 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.
  
  
  
  This paper describes and outlines the rationale, development and implementation of CPUP and MMCUP.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: a Department of Clinical Sciences, Division of Orthopaedics , Lund University , Lund , Sweden.
authors.forename: Ann I
authors.initials: AI
authors.lastname: Alriksson-Schmidt
authors.affiliation: b Department of Clinical Science and Education , Karolinska Institutet , Stockholm , Sweden.|c Department of Hand Surgery , Södersjukhuset , Stockholm , Sweden.
authors.forename: Marianne
authors.initials: M
authors.lastname: Arner
authors.affiliation: d Department of Clinical Sciences , Paediatrics, Lund University, Skåne University Hospital , Lund , Sweden.
authors.forename: Lena
authors.initials: L
authors.lastname: Westbom
authors.affiliation: e Department of Women's and Children's Health , Astrid Lindgren Children's Hospital, Karolinska Institutet , Stockholm , Sweden.
authors.forename: Lena
authors.initials: L
authors.lastname: Krumlinde-Sundholm
authors.affiliation: f Department of Health Sciences, Faculty of Medicine , Lund University , Lund , Sweden.
authors.forename: Eva
authors.initials: E
authors.lastname: Nordmark
authors.affiliation: a Department of Clinical Sciences, Division of Orthopaedics , Lund University , Lund , Sweden.|g Centre for Clinical Research, Uppsala University , Västerås , Sweden.
authors.forename: Elisabet
authors.initials: E
authors.lastname: Rodby-Bousquet
authors.affiliation: a Department of Clinical Sciences, Division of Orthopaedics , Lund University , Lund , Sweden.
authors.forename: Gunnar
authors.initials: G
authors.lastname: Hägglund
mesh_terms: D000293:Adolescent; D000328:Adult; D002547:Cerebral Palsy / Q000534:rehabilitation*; D002648:Child; D019988:Children with Disabilities / Q000534:rehabilitation*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008591:Meningomyelocele / Q000534:rehabilitation*; D011159:Population Surveillance; D016730:Program Development; D015397:Program Evaluation; D055502:Secondary Prevention; D013548:Sweden; D016896:Treatment Outcome
keywords: CPUP; Cerebral palsy; MMCUP; disability; myelomeningocele; secondary prevention