2024-02-07 06:00:00
“There are various conditions that can lead to PAH,” says Duijnhouwer. He estimates that around 1,000 to 1,200 patients with PAH are treated throughout the Netherlands. The condition cannot be cured. “People with PAH usually ultimately die from heart failure.”
Because the symptoms are not initially specific, it can take a long time for patients to be diagnosed. Then there are several options when it comes to treatment. “There are four categories of medicines,” says Duijnhouwer. “You can start with one drug or prescribe multiple medications from multiple categories, depending on the underlying cause, how sick the patient is and the prognosis.”
Search in EPD
“We wanted to know whether we are treating patients optimally,” says Duijnhouwer. “Both at patient level and for the entire patient population. For this we needed a quality monitor, which was also a wish of the Association of Pulmonologists and Tuberculosis and the Dutch Healthcare Authority.”
Duijnhouwer started with the Patient Finder module from CTcue, a system from IQVIA that offers privacy-by-design technology to unlock data. “I thought it was a great advantage that I could get started with it straight away. As a doctor, I was able to retrieve the patients I was looking for from our EHR. Even if the information was in plain text. I could make all possible combinations and enter search terms. This provided an almost foolproof system that allowed me to find all people diagnosed with PAH. I had never been able to do that before.”
Understanding PAH
One of the insights Duijnhouwer has gained so far is that his patients are on average much older and have more comorbidities than patients described in studies.
“That is the main reason why people with a high risk profile receive less medication than you would expect based on the guideline. Sometimes you should actually be treating at full capacity, but you are dealing with an 83-year-old who also has a left-sided heart problem and lung disease and does not tolerate all medications well. That also explains why people have relatively many complaints.”
Read the entire interview in edition 1 of ICT&health, which will be published around February 15.
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