A combined surveillance program and quality register improves management of childhood disability

Abstract

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.

Bone and joint complications and reduced mobility are associated with pain in children with cerebral palsy

“…All habilitation units in Sweden where children with CP generally receive care participate in CPUP. Children suspected of having CP are eligible to participate, resulting in a population‐based database that includes approximately 95 per cent of children with (or suspected) CP born after 2000 . Data from the most recent CPUP assessments from 2009 to 2017 were included.…”

Assessments of pain in children and adolescents with cerebral palsy: a retrospective population‐based registry study

“…The follow‐up includes regular assessments by physiotherapists and occupational therapists at the rehabilitation services. Based on the results of physiotherapist assessments, risk groups are identified and followed with hip and spine radiographs, evaluated by orthopaedic surgeons . Early detection through these assessments and early intervention have almost eliminated hip dislocations in the CP population .…”

Stability of the Gross Motor Function Classification System in children and adolescents with cerebral palsy: a retrospective cohort registry study

“…In CPUP, well‐established body structure indicators (e.g. Reimer's migration index, passive range of motion) are used to monitor progress over time; interventions are initiated if indicated . The GMFCS was included in CPUP in 1995, and in 2009 it was replaced by the GMFCS ‐ E&R. Because individuals are followed prospectively, a large longitudinal population‐based data set with numerous GMFCS assessments per individual is available and was used in the current study.…”