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A combined surveillance program and quality register improves management of childhood disability
Lund Univ, Div Orthopaed, Dept Clin Sci, Lund, Sweden..
Karolinska Inst, Dept Clin Sci & Educ, Stockholm, Sweden.;Soder Sjukhuset, Dept Hand Surg, Stockholm, Sweden..
Lund Univ, Skne Univ Hosp, Dept Clin Sci, Paediat, Lund, Sweden.;Karolinska Inst, Astrid Lindgren Childrens Hosp, Dept Womens & Childrens Hlth, Stockholm, Sweden..
Lund Univ, Dept Hlth Sci, Fac Med, Lund, Sweden..
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2017 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 39, no 8, 830-836 p.Article in journal (Refereed) Published
Abstract [en]

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 rehabilitationIndividuals 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. 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.

Place, publisher, year, edition, pages
TAYLOR & FRANCIS LTD , 2017. Vol. 39, no 8, 830-836 p.
Keyword [en]
Cerebral palsy, CPUP, disability, MMCUP, myelomeningocele, secondary prevention
National Category
Nursing Physiotherapy
Identifiers
URN: urn:nbn:se:uu:diva-319803DOI: 10.3109/09638288.2016.1161843ISI: 000395107800013PubMedID: 27044661OAI: oai:DiVA.org:uu-319803DiVA: diva2:1087925
Available from: 2017-04-10 Created: 2017-04-10 Last updated: 2017-04-10Bibliographically approved

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