Personalized care is about the outcome of illness and treatment for the individual patient. But this approach has a downside: the multitude of measurement tools and outcomes becomes unmanageable. "Only by standardizing outcome measurements as much as possible can we personalize care," argues APH researcher Caroline Terwee, professor of Outcome Measurements in Healthcare. She delivered her inaugural lecture on December 7.

Every patient is unique and the average patient does not exist. To tailor treatment and engage with patients, reliable information is needed about the outcomes of illness and treatment that patients find important. Patient-reported outcome measures, or PROMs for short, are used for this purpose. However, a multitude of questionnaires and measurement instruments are used. This diversity makes the implementation of PROMs in healthcare impractical, Terwee believes. Moreover, as a result, results from care and research are poorly comparable. "A waste of research money and resources," the professor concludes.

Universal measurement scales

Terwee advocates a basic set of outcomes and universal measurement scales for patient-reported outcomes that are relevant to nearly all patients, such as anxiety, fatigue or physical functioning. "I want to accelerate Initiatives on standardization. We need to shift the focus from measuring illness and its consequences to measuring people's feelings and functioning. Regardless of their conditions."

Proper interpretation

"Only by standardizing outcome measurements as much as possible we can personalize care," Terwee argues. That is why she is working with modern measurement methods to create one sustainable measurement system of generic outcomes: PROMIS. "This stands for 'Patient Reported Outcomes Measurement Information System.' This allows us to measure the most relevant outcomes in a standardized way in all people, supplemented by disease-specific outcomes where necessary. By using the same basic set for all patients, you can get to know the scores and interpret them properly," Terwee said.

Item banks

Unlike generic PROMs, PROMIS does not use fixed questionnaires, but rather so-called "item banks" and Computer Adaptive Testing (CAT). Each item bank measures one topic, such as fatigue, depression or physical functioning. By using CAT, the questionnaires are user-friendly and patients need to fill out fewer questions. Terwee: "In the coming years, I want to focus my research on the further development of generic item banks for measuring people instead of diseases. Ultimately, that's what you use the outcome information for: to enter into a conversation with the person behind the measurements in order to provide appropriate care."

Source (in Dutch): Amsterdam UMC