Econometrics Merel van Diepen (LUMC) will develop predictive models related to the quality of life of patients with kidney. These models can provide patients with information on what to expect in terms of disease-related aspects that they themselves consider important. Van Diepen received a Kolff Scholarship from the Kidney Foundation for this research.
In the Department of Clinical Epidemiology, Van Diepen has long been developing models for the prediction of clinical outcomes in individual patients. First, the goal is to be able to inform patients about what to expect in terms of treatment or course of the disease. “This is important information for the patient. In addition, forecasting models can identify high-risk groups that can benefit from an intervention. “
More and more models
As computers can do more and more, the number of models is increasing. These are becoming increasingly complex, but according to Van Diepen a clear clinical question is often missing. It also happens that impractical methodological choices are made during development, making a model difficult to apply. “More and more models are also being developed in the field of nephrology. But few of them are actually implemented. It’s a shame. Because if doctors have access to the data and use it to start a conversation with patients, it has great potential for patient-oriented care and shared decision making, for example. The data is certainly not intended to replace the doctor, because he knows the patient better and has a clinical vision. But data can provide support for conversations or decisions. That’s why I hope to put more models into practice ”.
Not just clinical measures
The application of the models begins with external validation, i.e. testing them on new patients. Van Diepen has been conducting studies in recent years where he has compared models. However, she gradually realized that models often focus on clinical outcome measures, such as decline in kidney function, initiation of dialysis, or death. “But there is much more to patients than just clinical measures, such as symptom burden and quality of life. More and more attention is being paid to patient outcomes, i.e. outcomes that are important to the patient. Patients can use PROM questionnaires to indicate how they feel and what their quality of life is. For example, if complications occur from one treatment, it has a greater impact on one patient than on another. It is good that these aspects are discussed in the living room. Fortunately, this is happening more and more. “
Give yourself more control
With the current grant from the Kidney Foundation, Van Diepen will develop prediction models for patient outcomes with the aim of giving patients an idea of what awaits them in different aspects of their disease and treatment. This can give them a little more control over their situation and possibly reduce the stress on their future. “And maybe we can give them an idea about the quality of life when, for example, whether to start dialysis or not. This can help in their choice, “says Van Diepen.
Van Diepen is now supervising two graduate students. They started developing a questionnaire for patients about outcomes that are important to them: what information do patients need and at what point in the care process? This questionnaire will be distributed in the short term through the patient association. “We also track what types of models are already available, which ones are still missing, and what options are available for implementation. We also want to validate existing models. It will be a great job, because there are hundreds of models ”.
New techniques
The next step will be to create templates that are still missing. This requires techniques that are not yet widely used. “Clinical results are often a yes-no answer to a question, such as whether or not to start dialysis. The results for quality of life are much broader “, explains Van Diepen.” Our research is therefore also methodological: how can we make such predictive models? And if we have and apply such a model, it will also have an impact on clinical practice “Do we see an improvement in quality of life or health somewhere? Such impact studies are almost never done.”
The research project started in September 2021 and will last four years. There is also good cooperation with the patient association. Van Diepen finds this enriching: “We discussed with patients to develop our questionnaire. They make the search more lively and provide inspiration. Patient experiences, that’s what you do it for ”.
What is and does an econometrician do?
Econometrics is a mix of statistics and economics. Merel van Diepen explains: “Economists design models for economic processes. I initially focused on consumer behavior, but preferred to do something with more social relevance. At the LUMC Department of Clinical Epidemiology I was able to develop models for renal patients. It was new to me to work with doctors, but I’ve been doing it for about twelve years. With my methodological and statistical knowledge and experience, I really feel part of this field ”.
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