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  • 1.
    Alriksson-Schmidt, Ann
    et al.
    Lund Univ, Fac Med, Dept Orthoped, Lund, Sweden.
    Jarl, Johan
    Lund Univ, Fac Med, Dept Hlth Econ, Lund, Sweden.
    Rodby-Bousquet, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Clinical Research, County of Västmanland. Lund Univ, Fac Med, Dept Orthoped, Lund, Sweden.
    Josenby, Annika Lundkvist
    Lund Univ, Fac Med, Dept Hlth Sci, Lund, Sweden;Skane Univ Hosp, Childrens Hosp, Lund, Sweden.
    Westbom, Lena
    Skåne Univ Hosp, Childrens Hosp, Lund, Sweden; Lund Univ, Fac Med, Dept Paediat, Lund, Sweden.
    Himmelmann, Kate
    Univ Gothenburg, Inst Clin Sci, Dept Pediat, Sahlgrenska Acad, Gothenburg, Sweden.
    Stadskleiv, Kristine
    Oslo Univ Hosp, Dept Clin Neurosci Children, Oslo, Sweden.
    Ödman, Pia
    Linköping Univ, Fac Med, Dept Med & Hlth Sci, Linköping, Sweden.
    Svensson, Ingrid
    Lund Univ, Dept Biomed Engn, Lund, Sweden.
    Antfolk, Christian
    Lund Univ, Dept Biomed Engn, Lund, Sweden.
    Malesevic, Nebojsa
    Lund Univ, Dept Biomed Engn, Lund, Sweden.
    Jeglinsky, Ira
    Arcada Univ Appl Sci, Dept Hlth & Welf, Helsinki, Finland.
    Saha, Sanjib
    Lund Univ, Fac Med, Dept Hlth Econ, Lund, Sweden.
    Hägglund, Gunnar
    Lund Univ, Fac Med, Dept Orthoped, Lund, Sweden.
    Improving the Health of Individuals With Cerebral Palsy: Protocol for the Multidisciplinary Research Program MOVING ON WITH CP2019In: JMIR Research Protocols, ISSN 1929-0748, E-ISSN 1929-0748, Vol. 8, no 10, article id e13883Article in journal (Refereed)
    Abstract [en]

    Background: Cerebral palsy (CP) is one of the most common early onset disabilities globally. The causative brain damage in CP is nonprogressive, yet secondary conditions develop and worsen over time. Individuals with CP in Sweden and most of the Nordic countries are systematically followed in the national registry and follow-up program entitled the Cerebral Palsy Follow-Up Program (CPUP). CPUP has improved certain aspects of health care for individuals with CP and strengthened collaboration among professionals. However, there are still issues to resolve regarding health care for this specific population.

    Objective: The overall objectives of the research program MOVING ON WITH CP are to (1) improve the health care processes and delivery models; (2) develop, implement, and evaluate real-life solutions for Swedish health care provision; and (3) evaluate existing health care and social insurance benefit programs and processes in the context of CP.

    Methods: MOVING ON WITH CP comprises 9 projects within 3 themes. Evaluation of Existing Health Care (Theme A) consists of registry studies where data from CPUP will be merged with national official health databases, complemented by survey and interview data. In Equality in Health Care and Social Insurance (Theme B), mixed methods studies and registry studies will be complemented with focus group interviews to inform the development of new processes to apply for benefits. In New Solutions and Processes in Health Care Provision (Theme C), an eHealth (electronic health) procedure will be developed and tested to facilitate access to specialized health care, and equipment that improves the assessment of movement activity in individuals with CP will be developed.

    Results: The individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained.

    Conclusions: In this 6-year multidisciplinary program, professionals from the fields of medicine, social sciences, health sciences, and engineering, in collaboration with individuals with CP and their families, will evaluate existing health care, create conditions for a more equal health care, and develop new technologies to improve the health care management of people with CP.

    International Registered Report Identifier (IRRID): DERR1-10.2196/13883

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