MOVING ON WITH MOVING ON WITH CEREBRAL PALSY

In the research program MOVING ON WITH CEREBRAL PALSY, multidisciplinary research is conducted related to people with disabilities with a main focus on cerebral palsy (CP).

In general, the program is divided into three overarching themes: (1) Evaluation of disability, (2) equal treatment in and access to healthcare and social insurance programs, and (3) new solutions and processes in healthcare.

This application touches on all three of these themes and focuses largely on communicating our current findings to relevant stakeholders.

Based on our research to date, we intend to address the following objective from the program: "to evaluate the implementation of the CPCog protocol in Sweden and Norway" as our research has demonstrated huge regional differences in Sweden but not in Norway. CPCog are guidelines developed by a Nordic expert panel consisting of neuropsychologists.

Children with CP -- but also with spina bifida (MMC) -- are recommended to be offered neurocognitive assessments before starting school (age 5-6-years) and before starting junior high school (age 12-13-years) via their habilitation clinics. This regardless of the degree of disability. CPCog is implemented within the framework of CPUP, which is a national quality register with over 95% coverage.

The main applicant also works with the national quality register MMCUP, which is a younger national quality register for people with the more rare disability MMC.

We are also working on implementing CPCog (then called MMCog) for these individuals as it has long been known that individuals with MMC and comorbid hydrocephalus have a so called "cognitive phenotype" with pronounced problems related to executive function.

In this project that focuses on impact, we will (1) Develop evidence-based information regarding cognition for people with CP and MMC.

The information will be translated into a number of languages ​​and made available both on the website and the habilitation units. (2) Lecturing and informing about cognition and the importance of neuropsychological examinations to users and families via user organizations. (3) Actively work together with psychologists and habilitation managers to support them to more effectively implement CPCog and MMCog. (4) Arrange information "disability days" for Swedish, Finnish, and international master students studying global health at Lund University and Arcada University.

We will cooperate with the patient organization CP Sweden.