A research program addressing pain in children and adolescents with cerebral palsy (CP). Our vision is that all every child and adolescent living with CP experience their pain as sufficiently managed to be able to enjoy and live their life to the fullest.
About the project
The idea for the CPPain-program came from the staff at a special needs school in the municipality. They had observed severe and unrelieved pain among children and adolescents with severe disabilities and how their pain negatively interfered with quality of life and function. The municipality asked the hospital to collaborate with them to improve clinical practice and the situation for these vulnerable children.
The CPPain-program, is an international research collaboration between Norway, Sweden, Finland, USA and Canada. The program is coordinated from Telemark Hospital Trust and Vestfold Hospital Trust, is carried out in collaboration with Porsgrunn and Skien municipalities and with support from the Cerebral Palsy Association. The program period is January 2019.december 2025. It will include an extensive evaluation of the current situation, using both qualitative (interviews) and quantitative methods (CPPain survey). Findings will be used as a starting point to develop, carry out and evaluate a user-directed intervention in Skien and Porsgrunn municipalities and at Telemark Hospitals. Experiences will be used to manualized the intervention and disseminate it more broadly.
The main idea behind the CPPain-program is that children and adolescents with CP and their parents together have the best knowledge of the child or adolescent’s pain burden and need to be an integrated part of describing the problem, devising and implementing solutions, and evaluate their effect in close collaboration with researchers, health care personnel and professional caretakers. From there, we will involve healthcare services at the hospital and in the municipalities in developing solutions in a continued collaboration with children/adolescents and their parents. The CP-association in Telemark is represented in the program organization with a user representative. The program organization also includes two advisory panels, one user panel and one clinician panel.
For more information, see www.sthf.no/cppain and select “English version”.
The main objective is to reduce the pain burden in children and adolescents living with CP.
So far, three PhD-projects have been established within the program:
1. Pain Interference in Children with Cerebral Palsy – PIC-CP. The aim of this project is to conduct a comprehensive exploration of the current situation and develop a feasible intervention for managing pain in children with CP. 2019-2023. PhD candidate Olav Aga Kildal
2. The lived experiences with pain burden and pain-related support for children and adolescents with cerebral palsy. The aim of this project is to create an in-depth understanding of the pain burden and pain-related support experienced by children and adolescents with CP and their parents, to be able to offer better treatment options and subsequently reduce their pain burden. 2020-2023. PhD candidate Elisabeth R. Rinde
3. New methods to predict pain in children with severe cerebral palsy (Predict CPPain). Our long-term objective is to establish a model to predict pain progression and treatment-related outcomes in children with severe CP, and refine that model to be feasible within the healthcare setting. Estimated start medio 2021. PhD candidate Annette Steen-Hansen Krøglid
- Telemark Hospital Research Fund from a testamentary gift by Tordis Elisabeth Dahl
- South Eastern Norway Regional Health Authority
- Norway: Telemark Hospital (STHF), Vestfold Hospital, University of Oslo, Oslo University Hospital, Cerebral Palsy Association, Cerebral Palsy Registry of Norway (CPRN), Cerebral Palsy Follow-Up Program (CPOP), Skien and Porsgrunn municipalities
- Sweden: Lund University, Lund; Örebro University, Örebro; Dalarna University, Falun
- Finland: Arcada University of Applied Sciences, Helsinki
- USA: Gillette Children’s Specialty Healthcare, St. Paul, Minnesota; University of Minnesota, Minneapolis, Minnesota
- Canada: Centre for Pediatric Pain, IWK Health Care, Halifax, Nova Scotia; Dalhousie University, Halifax, Nova Scotia; University of Guelph, Ontario
- Barney CC. Andersen RD. Defrin R. Genik LM. McGuire BE. Symons FJ. Challenges in pain assessment and management among individuals with intellectual and developmental disabilities. PAIN Reports. 2020; 5(4), e821. doi: 10.1097/PR9.0000000000000822
- Andersen RD. Bruflot SK. Smerter hos barn og unge med CP – Bryr vi oss? CPPain-programmet. CP-bladet. 2019; 65(2): 28-29.