New sleep study: People with Cerebral Palsy experience poor sleep quality
A new Dutch research project is studying sleep and physical activity in people with Cerebral Palsy (CP). 46 Danes with CP have participated in the project.
Many adults with CP experience severe fatigue that can significantly limit their daily lives. This fatigue is often much more intense than what people without CP usually experience.
Research shows that increased fatigue in people with CP is closely linked to sleep and physical activity. A research team in the Netherlands is currently investigating these two parameters in adults with CP in the Netherlands and Denmark.
Since summer 2023, the Elsass Foundation has been supporting and working with PhD and senior researcher Olaf Verschuren and PhD Ilse van Rijssen from the Centre of Excellence for Rehabilitation Medicine in Utrecht. The research team has used a questionnaire to monitor and analyse sleep and physical activity in adults with CP, including 46 Danes.
Poor sleep quality and the need for sleep medication
The results from the questionnaire reveal that 4 out of 10 participants rate their sleep as poor or very poor, while half of all participants use sleep medication at least once a week. Forty percent of participants also report experiencing difficulties with daily activities.
Poor sleep quality is often due to problems falling asleep, waking up at night, discomfort from temperature, and pain.
The figure on the right shows the average time adults with CP spend on different activities in a week. According to physical activity guidelines, at least 150 minutes of moderate to high-intensity activity per week is recommended. 40% of the study participants do not meet these recommendations.
Source: Olaf Verschuren and Ilse van Rijssen, Center of Excellence for Rehabilitation Medicine.
Stine Flensburg Hansen, a physiotherapist with an MSc in Health at the Elsass Foundation, says the results align with what she sees when working with people with CP in various programmes.
"I'm not surprised that nearly half of the participants have trouble sleeping. Many of the people with CP we speak with report experiencing pain at night that disrupts their sleep, while others mention that they often have racing thoughts that keep them awake."
Underestimating the importance of sleep
Staying physically active is important for everyone, but it can be especially challenging for people with physical disabilities—especially if they have trouble sleeping.
The research aims to find out how healthcare professionals can use sleep management to help people with CP be more active. Physical activity alone isn't enough to stay healthy. To prevent diseases and promote overall health, focusing on sleep is also important. However, according to Stine Flensburg Hansen, sleep is often an area that is underestimated.
“People often tend to forget how important sleep is. When working with people with CP, the focus is often on what they can do during their waking hours - for example, work, hobbies, leisure activities, or exercise. These are the topics we usually focus on, but we pay less attention to sleep. But good sleep is essential for the body and mind to work well, and poor sleep can affect mental health.”
Tools for sleep screening
The questionnaire was the first phase of the research project. Currently, the Dutch researchers are working on the next phase, which involves developing a series of modules with guides for exercises and tips to help people with CP improve their sleep and physical activity.
Initially, participants in the Netherlands will go through the modules at home. Afterwards, Olaf Verschuren and Ilse van Rijssen will assess whether it has made a difference to their sleep and physical activity. The plan is for Danish participants to try out the modules at home in 2025.
The last part of the project will be to put this new knowledge into practice using tools that can both screen for and manage sleep and physical activity problems in people with CP. This is something Stine Flensburg is looking forward to:
“With this understanding of sleep and its challenges, we can take better action and include it in our programmes, advice, and information sharing. There are definitely things we can adjust to improve sleep for individuals with CP. I’m sure that helping people with CP sleep better through different initiatives and focus areas will have a big impact on their rehabilitation and physical activity levels."
