Digital Headache diary
Leiden University Medical Centre (LUMC)
The Leiden University Medical Center (LUMC) uses Patient Journey App to monitor patients with migraine. By filling out their headache diary daily via the app, both the patient and the healthcare provider gain insight into the progression of the condition.
Gisela Terwindt
Neurologist-biologist and Professor of Neurology, specialising in paroxysmal neurological disorders at the Leiden University Medical Center.
Headache diary
Research shows that patients often forget the details of their headaches, such as how many headache days they had, what medication they took, and whether it was effective. We noticed that patients started creating their own headache diaries, bringing in complex charts and lengthy notes, which were not useful for us as healthcare providers.
Both patients and healthcare providers needed clearer insight into the course of the headaches, which led us to develop the digital headache diary. Through the app, patients receive a push notification every morning to fill in the questionnaire. This data is then immediately accessible to both the patient via the app and the healthcare provider through the Electronic Patient Record (EPR).
“We noticed that patients were creating their own headache diaries”
Benefits for the patient and healthcare provider
With the app, patients have immediate access to their own data, giving them better control over their headaches. Additionally, the app monitors medication use, allowing healthcare providers to better assess its effectiveness and prevent patients from unknowingly exceeding certain limits. The app directly influences their behaviour and approach.
Another major advantage is that both patients and healthcare providers see exactly the same overview—the patient on their phone and the provider in the Electronic Patient Record (EPR). When I or the nurse provide remote care through a video consultation, there’s no need to share screens. This allows for a very focused conversation with the patient, which is highly beneficial for both parties.
Finally, the biggest difference with other headache apps is that it’s not the patient who determines whether it was a headache day, but a validated algorithm. This is crucial because various factors are involved. The headache diary is a validated tool, ensuring that healthcare providers have access to reliable information.
“A validated algorithm determines whether it was a headache day”
Feedback patients
During the development of the headache diary, patient feedback was crucial in optimising it. For example, one adjustment we made was the timing of the push notification for completing the questionnaire. It is now set to be sent when patients wake up, before they typically head to work. This is seen as the most convenient time to fill in the questions about yesterday’s headache. If they forget, they receive an additional push notification in the evening. This is a simple, small change that greatly improves user experience.
“During the development of the headache diary, patient feedback was crucial in optimising it”
Future
We can elevate headache care in the Netherlands by using the same tools.
For example, with expensive headache medications that require patients to meet certain conditions, healthcare providers need to demonstrate compliance. If we all use the same tool, we could collectively verify this.
Collaboration with primary and secondary care is also important. Instead of patients remaining under hospital care for a long time, care could be transferred earlier to the GP, as everyone can access the same system to monitor the patient's condition. This means that remote care can be provided and consultations can be made with the GP or practice nurse without the patient needing to visit the hospital repeatedly. This will ultimately be cost-saving.
At the same time, the data can be used for research. This is something we already do extensively at LUMC. In the coming years, we will focus on triggers, factors that provoke headaches. One of the main questions from patients with headaches is: why do I have an attack at a certain time? This can only be investigated if they keep track of these triggers accurately.
“The collaboration with Patient Journey App is very pleasant. We are dealing with important patient data, and we use the headache diary as a diagnostic monitoring tool, so it must meet all necessary requirements. We have the expertise in headache management, and you have the expertise in tools, making Patient Journey App the right partner for us.”
More information?
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