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The Danish Cerebral Palsy Follow-up Program
Helle Mätzke Rasmussen1, Kirsten Nordbye-Nielsen2, Bjarne Møller-Madsen2
1Department of Pediatrics, The Danish Cerebral Palsy Follow-up Program, Lillebaelt Hospital, Kolding; Department of Orthopedic Surgery and Traumatology, Institute of Clinical Research, Odense University Hospital, University of Southern Denmark, Odense.
Insights
The Danish Cerebral Palsy Follow-up Program monitors healthcare quality for children with cerebral palsy (CP). This national database collects data to improve CP care and research.
Area of Science:
- Pediatric Neurology
- Rehabilitation Medicine
- Public Health
Background:
- Cerebral palsy (CP) affects children, necessitating specialized healthcare monitoring.
- The Danish Cerebral Palsy Follow-up Program was established to address this need.
- A national clinical quality database is crucial for tracking and enhancing CP care.
Approach:
- The program enrolls children aged 0-15 with CP and 0-5 with CP symptoms.
- Regular examinations by multidisciplinary teams assess motor function, diagnosis, and orthopedic status.
- Six quality indicators are derived from key variables like hip radiography, motor function, and diagnosis.
Key Points:
- The 2014 report covered 432 children with CP across three Danish regions, achieving 82% population coverage.
- Data collection includes annual assessments of motor function, manual ability, and orthotics.
- Radiographic hip examinations and diagnoses are integral to the data.
Conclusions:
- The Danish Cerebral Palsy Follow-up Program is evolving into a comprehensive national clinical quality database.
- This database offers significant potential for research into CP prevalence and treatment efficacy.
- It serves as a vital tool for improving health outcomes for children with CP.
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.
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