CPUP - Swedish National Health Care Quality Programme for prevention of hip dislocation and severe contractures in Cerebral Palsy

Gunnar Hägglund MD, PhD
Department of Orthopedics
Lund University Hospital
Sweden

Introduction

Children with cerebral palsy (CP) often have an increased muscle tone, muscle weakness and muscle imbalance.  For this reason, they are at  an increased risk of developing muscle contracture, hip dislocation and scoliosis. Hip dislocation in CP results in significant morbidity in terms of pain, contractures, sitting/standing/walking problems, fractures, skin ulceration and problems with perineal care, pelvic obliquity and scoliosis.

The first report indicating that hip dislocation in CP is preventable was published fifty years ago.

On the basis of this knowledge, CPUP, a cerebral palsy register and a health care programme for children with CP,  was established in southern Sweden in 1994.  All children with CP, who were born in the area since 1992 were included. The main goal of the programme is to prevent hip dislocation and severe contractures. Other aims of the programme are to describe the course of functioning and development in CP, to evaluate treatment methods and increase cooperation between health care professionals.
 

CPUP – The CP Follow-Up Programme

The health care programme includes a continuing standardized follow-up of each child in terms of an assessment form. The child’s local physiotherapist and occupational therapist fill in the form twice a year until the child is aged six and thereafter once a year. The assessment form includes the following: the CP-subtype, the gross motor function (GMFCS5), the manual ability (MACS4), measurements of passive range of motion, clinical findings, use of orthoses and other treatments. The results are all computerized, and the local health care team receives a report showing the child’s development over time. The programme also includes a standardized radiographic follow-up of the children’s hips and spine. All reports are administered via Internet since January 2007.

The information collected from the different reports and from the radiographic examinations gives a detailed picture of the child’s development over time. With this information, it is possible to detect deterioration in gross or fine motor function, range of motion, degree of hip displacement, degree of scoliosis etc at an early stage. This is the prerequisite for early intervention to prevent the development of severe contracture, hip dislocation and severe scoliosis.

Over the last few years the participation in CPUP has been spread all over Sweden as well as in the rest of Scandinavia. All counties of Sweden now participate in the programme and  in Norway, two counties corresponding to half the population, are also participants of the programme. There are plans of introducing CPUP in Denmark later this year.

CPUP was appointed by The National Board of Health and Welfare as a National Health Care Quality Register in 2005.
 

Results

In Southern Sweden (counties Skåne and Blekinge), children born 1992 and later (included in CPUP) are compared with children born 1990-91 (representing the time before CPUP).

Hip dislocation. No child following the prevention program has developed hip dislocation. Before CPUP, 10% of the children developed hip dislocation1.

Contractures. The number of children with severe contractures has been reduced with 70% 2. The number of children with windswept deformity has been reduced, as well as the severity of the deformity3.

 

Skoliosis The number of children with severe scoliosis have been reduced with 60%.

Discussion

Initially, children with CP have no skeletal, joint or muscle disease. The development of hip dislocation and severe contractures should be regarded as a complication to the cerebral palsy, and should be prevented.

For early detection and treatment in a population, a cerebral palsy register and standardized follow-up programme is needed. The main challenge of the follow-up programme is to identify all children with CP in the population at an early stage. The programme has been developed in collaboration with local multi-disciplinary team members such as neuropediatricians, physiotherapists, occupational therapists and orthotists and all interventions have the support of both the local team as well as the orthopaedic and hand surgeons.

It is of outmost importance that a child with CP is involved in an organisation with routines and capacity of early treatment and with competence to offer the best method of treatment. The many treatment options available make it very important that there is a good cooperation between all specialists. CPUP acts as the base for this co-operation.

Conclusion

With a cerebral palsy register, identifying all children with CP in a population, in combination with a screening programme it seems possible to prevent or reduce the development of severe contractures, hip dislocation and scoliosis in children with CP.

References

1. Hägglund G, Andersson S, Düppe H, Lauge-Pedersen H, Nordmark E, Westbom L. Prevention of dislocation of the hip in children with cerebral palsy. The first ten years of a population-based prevention programme. J Bone Joint Surg 2005; 87-B:95-101.

2. Hägglund G, Andersson S, Düppe H, Lauge-Pedersen H, Nordmark E, Westbom L. Prevention of severe contractures might replace multilevel surgery in cerebral palsy: results of a population-based health care programme and new techniques to reduce spasticity. J Pediatr Orthop B. 2005; 14:268-72.

3. Persson-Bunke M, Hägglund G, Lauge-Pedersen H. Windswept hip deformity in children with cerebral palsy. J Pediatr Orthop B. 2006; 15:335-8.

4. Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol. 1997; 39:214-223.

5. Eliasson A-C, Krumlinde-Sundholm L, Rösblad B, Beckung E, Arner M, Öhrvall A-M, Rosenbaum P. The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Dev Med Child Neurol 2006; 48: 549-554.

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