Swedish Study Seeks to Find Ways of Improving Healthcare, Access for CP Patients and their Families

A Swedish research program — involving a multidisciplinary team of professionals in collaboration with individuals with cerebral palsy and their families — will evaluate the existing healthcare conditions in Sweden, look at ways to equalize access to care, and develop new technologies to improve the healthcare management of people with CP.

The program’s outline is detailed in the report “Improving the Health of Individuals With Cerebral Palsy: Protocol for the Multidisciplinary Research Program Moving On With CP,” which was published in the journal JMIR Research Protocols.

Cerebral palsy (CP) is one of the most common disabilities of childhood, and although knowledge has advanced about the disorder, a number of healthcare delivery issues still need to be improved, the report stated.

Therefore, a team of physical therapists, physicians, and researchers from Lund University and other Swedish institutions have developed a six-year research program — called “Moving on with CP” — with the purpose of improving healthcare for CP patients, developing new solutions for care provision, and evaluating equality in existing healthcare and social programs in Sweden.

An important goal “is to ensure that the healthcare of individuals with CP is evidence-based, up to date, cost-effective, and fair” and does not depend on a person’s geographical location or sex, the report said.

In Sweden, medical care and treatment is provided free of charge to patients with CP. However, many users consider that the benefits they’re entitled to rely on haphazard applications, and decisions “are made based on geography, which physician completed the certificate, and who processed the claim,” the report stated.

The research program includes nine projects with three main themes:

Theme A, Evaluation of Existing Healthcare, will use data from a CP registry in Sweden and other Nordic countries, called the Cerebral Palsy Follow-Up Program (CPUP), along with national databases, surveys, and interviews to determine the effects of population-based preventive versus reactive (regular) treatment approaches. The researchers will also investigate how much patients are affected by pain, and determine what is relevant to study and report for adults with CP.

In theme B, Equality in Healthcare and Social Insurance, mixed methods and registry studies and focus-group interviews will be used to understand if social insurance contributes to the financial protection and living conditions of families. The researchers will also try to determine how equitably the access to support is distributed, and hope to develop fairer, and more labor-saving insurance certificates.

In New Solutions and Processes in Healthcare Provision (theme C), an eHealth (electronic health) service procedure will be developed and tested to facilitate access to specialized healthcare. In addition, a home-based device will be developed to continuously measure movements in CP patients in order to improve healthcare assessments.

The program is multidisciplinary, consisting of physicians, psychologists, public health scientists, physical therapists, health economists, and engineers.

The views of patients and family members will also be taken into account — an aspect that is “crucial to get the insights of those who are ultimately affected,” the report said.

“The results of this research program will be of interest to many different research areas such as medicine, social sciences, political science, health economics, as well as the fields of inequality, disability, and biotech research,” the report stated. “More importantly, the results will lead to tangible improvements in Swedish healthcare.”

The program is funded by the Swedish Research Council for Health, Working Life, and Welfare. The first results are expected at the end of 2019 and anticipated to be published at the beginning of 2020.