Launched a new decision aid for pancreatic cancer – ICT&health

Nearly 3,000 people are diagnosed with pancreatic cancer each year. In more than half the disease has already spread at the time of diagnosis and a cure is no longer possible. Developing decision support for this particular target group therefore requires different starting points than decision support for, for example, chronic diseases such as diabetes or COPD.

Medical oncologists

The Delta Plan Pancreatic Cancer Decision Aid was developed for this special group with metastatic cancer. The development of this decision aid has already made considerable progress history. At UMC+ in Maastricht, the involved medical oncologists Dr. Judith de Vos-Geelen and Dr. Liselot Valkenburg-van Iersel were already working in 2020 on the development of this special decision aid for pancreatic cancer. The 15 national pancreatic cancer hospitals, united in the DPCG (Dutch Pancreatic Cancer Group), have collaborated in this development. The decision aid was supposed to be launched in 2021, but finally arrived at the end of 2022.

Process control

Despite the fact that a cure is no longer possible, decision aid gives patients control over a situation that seems out of control. Dr. Liselot Valkenburg-Van Iersel, Dr. Judith de Vos-Geelen (medical oncologists) and Merlijn Graus (doctor-researcher) at UMC+ Maastricht have been closely involved in the development of the Pancreatic Cancer Decision Aid from the beginning . De Vos-Geelen tells al website van Maastricht UMC+: ‘When people hear that they have metastatic pancreatic cancer, it really affects them. In a short period of time, patients have to make drastic choices right away. Ideally, you’d like to give patients an escape route at such a time, but that’s not possible. All you can do is give them control over the process. And that’s exactly what the decision aid does.’

Decide with your doctor

Basically, a doctor can explain all possible treatment options to a patient. However, a decision aid gives patients the opportunity to go through all the advantages and disadvantages of a treatment together with others at home. The decision aid in the form of online questions guides the interested parties in an orderly and clear manner. “The choice not to seek treatment is also a possibility,” explains oncologist Valkenburg. “Everyone makes different choices in this process and the results of a decision aid are a good starting point for a discussion to arrive at the best possible outcome together.”

Implementation Aid to the decision on pancreatic cancer

ZorgKeuzelab is responsible for the development and implementation of decision support for pancreatic cancer. An explicit choice was made to allow patients to participate in this development process. Patients find it decidedly positive. “I find the decision aid to be very extensive and an added value for the patient,” says patient Richard van Beek, for example. “During my diagnosis, my wife always angrily wrote and signed during conversations with the doctor, which would not have been necessary if we had this decision aid.”

The pancreatic cancer decision aid is now being implemented in 15 specialist hospitals, which are united in the Dutch Pancreatic Cancer Group (DPCG). Patients receive an access code from their doctor, which allows them to access the questionnaire. In addition, the decision aid will be connected to the Delta plan Application for pancreatic cancer. In that app, patients find an up-to-date overview of clinical trials they may be able to participate in. The app also contains answers to frequently asked questions and gives patients the tools to ask specific questions at each stage of their treatment.