Patient central to care around acoustic neuromas; chooses his own treatment

Neve: “We use questionnaires to find out how acoustic neuroma patients experience care. We use the outcomes to improve care. Previously, we used a questionnaire with closed questions on predetermined topics. People could indicate how positive or negative they were about these topics, for example about their doctor. What we then missed was feedback on points that did not appear in the questionnaire, also we missed concrete leads on what we could improve. You could remedy that by asking open questions, but if you have five hundred patients fill in open questions, it takes a lot of time to analyze the answers. That doesn't work in practice.”

“That's why we created a program that uses artificial intelligence to analyze and rank answers to open-ended questions by topic, we call it the AI-PREM. The questions are not about the outcome of treatment, but about the care provided and how people experienced it. The program also indicates whether an answer is positive, negative or neutral. So it works like a sorting machine: all answers that deal with the same topic end up in the same bin. In this way, we can process large amounts of data and use it to make concrete improvements.”

• Choosing treatment together with the patient is an example of value-driven care.
• Using questionnaires to gain actionable insights is an example of data-driven care.
• LUMC believes that data-driven work and AI can make a valuable contribution to appropriate and value-driven care.

'The idea of having a tumor in my head makes me uneasy'

“An acoustic neuroma is a rare, benign tumor in the bridge angle, the space between the brain stem and the cerebellum in the head. Because the tumor grows slowly, it rarely poses an immediate major health hazard, but if it continues to grow, major problems can develop over time. There are three treatment options: surgery, radiation or wait and see. Which option is preferable depends on several factors, which vary from patient to patient and tumor to tumor. On average, each choice yields equal long-term quality of life for patients.

“We asked patients about their considerations when choosing between surgery, radiation or wait and see. Some logical answers came out of that, such as: 'my choice depends on whether the tumor grows or not.' But also some that we didn't see coming. For example: 'The idea that there is a tumor in my head makes me so restless. That's why I want it removed.' And: 'My partner received radiation for breast cancer last year. That was such a nasty process, so I don't want that”. These are examples of factors that we didn't immediately think of ourselves and so are good to know. These kinds of examples can help physicians in having a conversation with a patient and to better match the treatment choice with the patient. In the end, patient and doctor always decide together.”

Waiting for a phone call

“We then ask patients how they experienced our care. For example, how was the provision of information or our communication about waiting and turnaround times? An example: a patient had a scan done. It can take several weeks before someone gets a letter or phone call from us with the results. This has its reasons, for example that our team of specialists discuss all the scans every two weeks in a multidisciplinary meeting. But the patient doesn't know that. That's why we started working on clearly informing patients. We explain why it can take a while to get a result. At the same time, we have looked at how we can reduce the waiting time.”

“Another point for improvement is about telephone accessibility. Several patients had complaints about the telephone accessibility of our department. That's because we can't always have someone by the phone. But by clearly communicating when we can be reached, we have been able to improve this point of criticism.”

Patient is behind the wheel

“In addition, every month our specialists - the ENT doctor, neurosurgeon, radiologist and radiotherapist - discuss potential areas for improvement. A patient panel joins them every six months. This allows us to directly test whether our solutions meet patients' needs. We do not respond personally to questionnaires themselves because they are anonymous; we cannot see who has filled out what. That's just fine, because otherwise people might feel less free to answer.”

“This is how we try to make our care a little better every time. Measuring that improvement and expressing it in terms of hard care outcomes is difficult. However, we do know that patient experience and quality of care are very strongly linked. We also think that patients experience treatment more positively if they are well informed about it beforehand. For example, the patient has increasingly been given a central role in the care of acoustic neuromas. The patient is behind the wheel instead of in the back seat.”

“Meanwhile, the AI-PREM is also being used by other departments in LUMC. That provides a wealth of data, from which the AI machine keeps getting a little better. That's how it keeps evolving.”