Clinical Epidemiology (Oct 2016)
The Danish Cerebral Palsy Follow-up Program
Abstract
Helle Mätzke Rasmussen,1,2 Kirsten Nordbye-Nielsen,3 Bjarne Møller-Madsen,3 Mette Johansen,4 Niels Ellitsgaard,5 Charlotte Reinhardt Pedersen,6 Gija Rackauskaite,7 Henriette Engberg,8,9 Niels Wisbech Pedersen2 1Department of Pediatrics, The Danish Cerebral Palsy Follow-up Program, Lillebaelt Hospital, Kolding, 2Department of Orthopedic Surgery and Traumatology, Institute of Clinical Research, Odense University Hospital, University of Southern Denmark, Odense, 3Department of Children's Orthopaedics, Aarhus University Hospital, Institute of Clinical Research, Aarhus University, Aarhus, 4Department of Pediatrics, Aalborg University Hospital, Aalborg, 5Department of Orthopedic Surgery, Hvidovre University Hospital, Hvidovre, 6Department of Pediatrics, North Zealand Hospital Hilleroed, Hilleroed, 7Department of Pediatrics, Aarhus University Hospital, Aarhus, 8Research Unit of Clinical Epidemiology, Institute of Clinical Research, University of Southern Denmark, 9Centre for Clinical Epidemiology, Odense University Hospital, Odense, Denmark Aim of database: The Danish Cerebral Palsy Follow-up Program is a combined follow-up program and national clinical quality database that aims to monitor and improve the quality of health care for children with cerebral palsy (CP). Study population: The database includes children with CP aged 0–15 years and children with symptoms of CP aged 0–5 years. Main variables: In the follow-up program, the children are offered examinations throughout their childhood by orthopedic surgeons, physiotherapists, occupational therapists, and pediatricians. Examinations of gross and fine motor function, manual ability, muscle tone, passive range of motion, use of orthotics, and assistive devices are performed once a year; radiographic examination of the hips is planned based on the child's age and gross motor function; and the diagnosis is performed once before the age of 5 years. Six indicators were developed based on scientific literature and consensus in the steering committee, and their calculation is based on the following four main variables: radiographic examination of the hip, gross motor function, manual ability, and diagnosis. Descriptive data: The 2014 annual report includes results of the quality indicators in three of five regions in Denmark comprising 432 children with CP, corresponding to a coverage of 82% of the expected population. Conclusion: The Danish Cerebral Palsy Follow-up Program is currently under development as a national clinical quality database in Denmark. The database holds potential for research in prevalence, clinical characteristics of the population, and the effects of prevention and treatment. Keywords: cerebral palsy, clinical quality database, hip surveillance
