In the project “CP-North: Living Life with Cerebral Palsy in the Nordic Countries?” an interdisciplinary team of researchers from across the Nordic Region addresses a number of societal challenges associated with living with or being the parent of a child with cerebral palsy in the Nordic countries. They do this by using Nordic health data.
Cerebral palsy (CP) is rare, although the disease is still considered the most common muscle-related disability in childhood. However, most people with cerebral palsy are actually adults. How people with CP fare in life in terms of health, quality of life, education, employment and income is largely unknown. Parents of children with cerebral palsy are often under emotional and practical strain, but little is known about how these parents cope in terms of their own health, stress, employment and income.
Gunnar Hägglund is leading the project and works at Lund University in Sweden.
Why is it precisely this disease that you’re focusing on in your project?
– We’re focusing on cerebral palsy because it’s the most common motor-related disability in children. If you include all children up to the age of 18 who have cerebral palsy in the Nordic countries, there are approximately 4,000 in Sweden, 2,500 in Norway, Denmark and Finland respectively, and 150 in Iceland. The proportion of children who get cerebral palsy is roughly 2 in every 1,000 births. It’s a lifelong disability, so there are also many adults who are living with it.
What characterises the treatment of cerebral palsy in the Nordic countries?
– In the 1990s, Sweden began offering follow-up programmes for children with cerebral palsy, and since 2005, more than 95 percent of all children have followed the same programme. It provides us with some unique data about the lives of both children and adults with cerebral palsy. Since then, the follow-up programme has been expanded to the other Nordic countries. Norway, Denmark and Iceland have also introduced follow-up programmes. Although the cornerstone of the programmes is the same, there are also small differences between the countries. They have seen a clear advantage in following each other’s models on most points, so they can better compare and collaborate on treatment between the countries.
We also have Finland involved in the project, but there they don’t have a follow-up programme as in the other countries, and it’s been observed that children with cerebral palsy have more complications. For example, hip dislocation may occur, and then they need surgery. The children who are operated on are also older, and this means that the surgery is more challenging and more extensive.
What other differences are there in the treatment options for children with cerebral palsy in the Nordic countries?
– People with cerebral palsy need very different treatment options, depending on the degree of functional impairment. In this project, we’ve looked at what differences there are between the help offered in the various Nordic countries. Some children with cerebral palsy are given botulinum toxin, also known as Botox, because it helps relax the muscles. It turns out that in Sweden and Norway, twice as many children with cerebral palsy receive Botox treatment compared to those in Finland and Denmark. In Norway and Finland, children receive more physiotherapy treatment than in Sweden.
You’re saying that health care is supposed to be based on evidence, or at least based on best practices. Your results indicate that this isn’t necessarily the case when it comes to cerebral palsy. Why is that?
– There are many treatments for cerebral palsy on the market that aren’t based on evidence, and it’s understandable that families with children with cerebral palsy consider any possible treatment to do the most they can for their child. There are families who go abroad because the website of a private clinic looks nice and inviting, but then there’s the risk of getting treatment that does more harm than good. There are private facilities both at home and abroad whose methods aren’t based on evidence, so this is also a matter we’re working a great deal with in our project, because it’s important that there is close dialogue between the families of children with cerebral palsy and us who have knowledge of the disease.
If we were to compare treatment options in the Nordic countries with the rest of the world, what would you point out?
– If we compare the Nordics with other countries in Europe, we stand out positively because of our follow-up programmes, which enable us to offer those with cerebral palsy and their families help with regard to prevention and treatment. Still, there’s always room for improvement.
What should politicians in the Nordic countries do to improve treatment options?
– Basically, the treatment offered should be as good as possible, and it should be the same for everyone, regardless of where in the country they live. Politicians can make it easier for patients to seek treatment in their local area and reduce the waiting time for treatment.
We’re dealing with a group of patients who are suffering a lot, but whose voices are rarely heard in the public debate because they have enough on their plate taking care of themselves. Nor is it only the patients’ responsibility to point out the problems. As therapists and researchers, we also have a responsibility to point out the shortcomings in the treatment options.
What significance has the project had for those with cerebral palsy and their families?
– Before the follow-up programme was introduced in Norway, occupational therapy was seldom available. Now that it has been introduced, there is good availability for those who need it. We can see that there are differences between the Nordic countries, and by looking at who does things best, we can learn from each other and improve what’s available. Each country has its own strengths. Finland has no problems with waiting times for surgery, and on that point they’re probably the best in the Nordics. On the other hand, as I’ve mentioned, in Norway you have better options for physiotherapy. In this project, we’ll continue to look at what differences and similarities there are in other areas as well.
What other impact has your research results had?
– Having a follow-up programme is something that we in the Nordics have taken the lead in, but now it exists in other countries as well, including the UK. So, it’s a clear example of impact, even though it was introduced long before our research project started. Some of our data also shows the importance of early treatment to avoid hip dislocation. Before the introduction of the follow-up programme, one in ten people with cerebral palsy experienced hip dislocation, but now the figure is down to just one in two hundred people.
What is the Nordic added value of your project?
– That we have these health databases which contain detailed information about illness, medication use, cause of death, social information such as schooling, divorce, education and so on. It’s unique to the Nordic countries that we can link such health data together with our follow-up programmes, as we’ve done in our research project.