Since 2005 CPUP has been designated as a National Quality Register in Sweden. All the regions and county councils in Sweden are participating in CPUP. In Norway CPUP (CPOP) has existed since 2006 and was designated as a National Quality Register in 2009. The Region Syddanmark (South Denmark) has been participating since 2010 and in the coming years it is planned to include all the five regions in Denmark. CPOP in Denmark was design as National Quality Register in 2013. During 2012, parts of Iceland have also been participating in CPUP.
CPUP was started in 1994 as a cooperative project between the paediatric orthopaedics and the child habilitation centres. The background was that we saw a number of children with CP who developed hip dislocation (hip out of joint) and severe contractures (joint stiffness). We wanted to prevent the occurrence of these complications by creating a system to survey people with CP in an organized manner throughout childhood.
The objective of CPUP is:
- to prevent the occurrence of hip dislocation and severe deformities by means of a continuous and standardized surveillance, if necessary combined with treatment at an early stage and thereby optimize the functional ability and quality-of-life of those with CP.
- to gain knowledge about CP.
- to improve the cooperation between the various professionals with respect to people with CP.
The basis for CPUP is that all children with CP or CP-like symptoms should be identified and offered participation. The children enter the programme on the initiative of their local habilitation team. Early participation is important since hip dislocation and contractures can appear even during infancy.
People with CP are monitored in CPUP continuously from infancy until adulthood. Physical assessments with measurement of joint range of motion of arms and legs are performed regularly by an occupational therapist and a physiotherapist. Their hips and back are examined regularly by a physiotherapist and radiographic examinations according to the healthcare programme. Operations and other treatments are recorded. The continuous and standardized monitoring enables early detection of any deterioration. This creates the conditions for starting preventive treatment at an early stage.
In 2005, in a 10-year follow-up study of CPUP, we could show scientifically that, with CPUP, we could prevent hip dislocation and reduce the number of children who develop severe contractures, windswept-deformity and scoliosis. A survey with a questionnaire showed that the participants with CP, their families and all the participating professionals consider CPUP to lead to improved cooperation, improved healthcare and a more uniform healthcare in the country. Of the children and young people who have been offered participation in CPUP, 95% of the families have agreed to participate.
2. Manuals and evaluation forms