Interdisciplinary research project focusing on Restless Legs Syndrome

Restless Legs Syndrome (RLS) is a neurological disease that can be described as a relentless need to move, strong discomfort, and pain in the legs. RLS is seen as a hidden public disease and as many as one million Swedes may be affected. A new research project with members from all four schools at Jönköping University (JU), as well as three other universities and four Swedish regions, will develop an individually adapted digital CBT-based self-care treatment. The project has been granted SEK three million in support from the Kamprad family foundation.

Photo: iStockphoto/bymuratdeniz

RLS affects the entire life situation – severely disturbed sleep, pronounced daytime sleepiness, depression, and a generally reduced quality of life. Medical treatment can relieve symptoms, but not cure, which means that self-care is of great importance. In many cases the health care providers do not have sufficient competence in RLS. As a result, many sufferers lack a diagnosis, relevant medical treatment, and knowledge of self-care measures.

Self-care treatment based on cognitive behavioural therapy (CBT) has been tested with good results in an international study. There is no digital evidence-based CBT programme available in Sweden, which is needed to effectively reach more people. With a broad design approach, the project will develop an individual-based digital CBT-based self-care treatment that can be added to existing medical treatment for RLS.

“An easily accessible, individually adapted digital CBT-based self-care treatment that reduces RLS symptoms, improves sleep, reduces pain and depressive symptoms, and increases quality of life is missing in today's healthcare. It can be of value to a large group with RLS and their relatives,” says project leader Anders Broström, professor at the School of Health and Welfare, Jönköping University.

The long-term effects of the treatment will then be evaluated in a randomized controlled study on sleep, depressive symptoms, and quality of life in people with RLS.

More common among women

A first study, investigating the prevalence of RLS among the adult population worldwide, has been published in the prestigious Journal of Sleep Research. The researchers have done a systematic review study and meta-analysis of previous studies, published from 2000 to 2022. A total of 97 studies with 483,079 participants from 33 different countries were included.

The study, Worldwide estimation of restless legs syndrome: a systematic review and meta-analysis of prevalence in the general adult population, shows that the prevalence (the proportion of a particular population found to be affected by a medical condition) in the general adult population is around three per cent. Prevalence was higher in developed countries than in developing countries, among the elderly, and among women. Overall, the study shows that RLS is common. In total, it shows that around three per cent of the adult population has been diagnosed with RLS - but up to ten per cent have, according to other studies, symptoms that are typical of RLS.

“What we see in our recently published study, where we went through all these articles, is that RLS is very common, and my view is that here we can see the ‘tip of an iceberg’. There are likely a large number of individuals who do not receive a diagnosis or treatment for various reasons. More research is needed in this area to increase knowledge about RLS,” says Anders Broström.

Cooperation with other actors

The members of the project work at Jönköping University, Linköping University, Karolinska Institutet and Linnaeus University as well as in outpatient and inpatient care in Region Jönköping County, Region Östergötland, Region Kalmar and Region Stockholm. The Swedish RLS association's chairman, Sören Berg, is part of the project's management team, and research partners from the association actively participate in the design and analysis of the four different steps in the project. There is also active collaboration with the Swedish Society for Sleep Research and Sleep Medicine (SFSS).

“The RLS association sees this as an important project to raise awareness of the issue of RLS, and, above all, how it can add new findings to non-medical interventions. We are very keen to contribute in every way to increasing knowledge about RLS. The association's members have, for example, contributed with both survey responses and in-depth knowledge,” says Sören Berg, chairman of the RLS association.