What is your research about?

“I followed 25 patients and their carers for three years. The study was commissioned by the Ministry of Health, Welfare and Sport (VWS). The ministry wanted to know whether the health benefits of a service dog for people with epilepsy outweighed the costs. This is because training a service dog is expensive, as they need to be in training for a very long time. During my research, participants kept track of how many seizures they had every day, and filled out a comprehensive questionnaire every three months. It included questions on the quality of life of the patient and the informal carer, but also on, for example, care costs incurred, and whether people went to work or called in sick, and how many hours of informal care a patient needs. These are all factors we can take into account when calculating whether a service dog is cost-effective. At the end of the study, we interviewed participants to ask them what their experiences were.”

What are those auxiliary tasks that an epilepsy dog can perform for a patient?

“The tasks the dog learns differs depending on the person, everyone has different needs. It is often important that the dog can push an alarm button if the patient has a seizure. That alarm can be linked to a carer, a sound system at home or work, or an external caregiver. A dog can also bring a bag of medicine, and place a patient in a stable side position to keep the airways clear.

“Both tasks are useful in epileptic seizures as many people know them, where a patient falls to the ground and has convulsions. But there is a broad spectrum of epileptic seizures. There are also forms where the patient has a temporarily impaired consciousness but it is not apparent from their movements. In this case, the patient themselves do not realise they are having a seizure. A dog can then prevent the patient from continuing with daily actions that could suddenly become dangerous, such as climbing stairs, or crossing the road. During a seizure, people do not give their normal commands, so the dog knows something is up and blocks the road, for example.”

What is the main finding of your research?

“On average, the number of seizures decreased when there was a dog in the house. And the number of seizures decreased the longer the patient had the dog. After one year, patients’ seizures had declined by a third on average. That’s quite a lot. Especially since participants have had epilepsy for years and have already tried all kinds of treatments such as drugs, diets, surgeries and devices to reduce their seizures. We also saw that a service dog did not work for everyone. Some participants quit the study because training and walking a service dog had too great an impact on that person’s daily routine.”

How do you explain this reduction in seizures?

“There are different triggers of epileptic seizures: hormones, temperature, light. But the most important factor is stress. The most likely explanation is that epilepsy dogs cause patients to suffer less stress, reducing seizures. This may also explain why some study participants benefited more than others. It may be that the seizures of the patients who benefit less are triggered by something other than stress.”

And, in the end, do the benefits of a service dog outweigh the burdens?

“Yes, I had four different quality of life questionnaires and all four showed improvement. In particular, people scored better on questions about mental health and social and community functioning after having the service dog.

“The service dog saves a lot of costs. For example, patients end up in hospital less often, and saw a healthcare provider less often. The dogs also save time for informal carers: before the service dog, they spent an average of one full day a week on caring tasks. And that does not even include supervisory time, which also decreased with a service dog.”

What kind of impact on quality of life of patients and carers are we talking about?

“Above all, participants felt more independent, free and safe with a dog. Patients and informal carers sometimes find themselves unwillingly stuck together due to a need for supervision. For example, there was a carer who loved gardening but found it too dangerous to be in the big garden and where she could not see her daughter. And the patient wanted more time to herself, and watch TV without her mother looking over her shoulder. Because of the service dog, the mother was willing to go into the garden without fear of something happening in her absence.”

What did you like most about this research?

“I liked that there were many methodological challenges in the study. For example, you cannot provide a placebo dog in a control group. So how do you then measure how well something works? And working with a small sample size is also difficult; in total I only had 25 participants. We solved that very creatively.

“I also found the contact with the patients very special. I wasn’t actually trained for that, and it was quite exciting at the beginning. They sometimes had seizures in front of me, they shared emotional and difficult stories. That makes it very personal, which also makes it harder to remain objective. If it had turned out that a service dog would not be cost-effective, I would have had to support that.”

And were there any low points?

“The study almost failed because it was difficult to find subjects. It was difficult to remain critical when people wanted to apply who just did not meet the conditions, knowing that an extra subject made it more likely that the study could go ahead at all.

“Also, during the course of the PhD process, my father passed away. He had a dog he loved, who lives with me now. The paw print of the dog is on the cover of my dissertation, as a tribute to the dog who took care of my father, and my father who took care of me.”

Is your research going to ensure that epilepsy dogs will be reimbursed by insurers?

“In other medical interventions, there is often a clear player who benefits when it hits the market. For example, if a pharmaceutical company develops a new drug it will go all out to get it reimbursed. An interest like that is lacking here. In the end, it is up to practitioners to engage with insurers. If that is going to happen, these research findings will come in handy.”

How are the patients who participated in the study doing?

“They were allowed to keep the service dog. The oldest is six years old. I hope there will be a compensation decision before the study’s dogs are retired.”


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