Identifying & Selecting Disease-Specific PROMs

Patient-reported outcome measures (PROMs) are invaluable tools in the future treatment of chronic disease in healthcare. Disease-specific PROMs provide clear insights into patients' experiences, guiding healthcare providers in tailoring treatments to individual needs. Yet, a perplexing question arises: Why isn't there easy access to a comprehensive list if these disease-specific PROMs are so clear and universally agreed upon? In this blog, we'll unravel the mystery behind the accessibility challenges of disease-specific PROMs and explore the potential solutions to ensure this vital information is readily available to healthcare providers and patients.

The complexity of PROMs

Patient-reported outcome measures are crucial in understanding the patient experience comprehensively. However, their effectiveness lies in their specificity. Different diseases require different questions and assessments to capture patients' unique challenges and nuances. This specificity, while valuable, creates a vast array of PROMs tailored to various conditions, leading to a fragmented landscape. There is a centralised, universally accessible database through the International Consortium for Health Outcomes Measurement (ICHOM) which makes it easier for healthcare providers and patients to navigate this complexity efficiently. Still, ICHOM were only founded in 2012, so the database is evolving slowly.

What is ICHOM?

ICHOM, the International Consortium for Health Outcomes Measurement, is a global non-profit organisation advancing healthcare quality. They collaborate with healthcare professionals and patients worldwide to create standardised patient-reported outcome measures, called Standard Sets. These sets allow for consistent evaluation of treatments and medical conditions, enabling personalised care, improved patient outcomes and global comparisons of patients living with conditions. 

Are there standard PROMs?

Standardising disease-specific PROMs is a monumental task. Medical conditions often vary in their manifestations and impact from patient to patient. Crafting a universally applicable set of questions encompassing each condition's intricacies while remaining concise and accessible is challenging. Achieving consensus among healthcare professionals, researchers and patients on a standardised set of PROMs requires meticulous research, extensive collaboration and ongoing validation studies.  However, the result is a benchmark that provides practitioners with global comparison capability for people diagnosed with like conditions.

What PROM should be used when people are diagnosed with multiple conditions?

Selecting PROMs becomes a complex task when a patient has multiple chronic conditions. There isn't a one-size-fits-all answer because the choice of PROMs depends on the specific chronic conditions the patient is dealing with and the outcomes being assessed. Our blog on using PROMs for patients with multiple conditions discusses some of the considerations this topic.

Empowering patients with information

Accessibility to disease-specific PROMs is not just essential for healthcare professionals; it is equally empowering for patients. When patients access validated PROMs related to their condition, they better understand their symptoms, enabling more informed discussions with their healthcare providers. This knowledge enhances their active participation in decision-making, fostering a sense of control over their health journey.

Conclusion: empowering access, empowering care

While the challenge of choosing and making clear and agreed disease-specific PROMs easily accessible is multifaceted, it's a challenge that demands attention and collaboration. By acknowledging the complexity of PROMs, working towards standardisation, bridging global healthcare disparities, and choosing existing ICHOM-validated PROMs, we can pave the way for a future where healthcare professionals and patients have effortless access to the tools they need. For patients with multiple diagnoses, the choice of PROM with patients and the outcomes that matter to them. Empowering access to disease-specific PROMs isn't just about providing information; it's about empowering care, fostering collaboration, and ensuring that every patient receives the personalised, high-quality healthcare they deserve.

Further Learning:

For further details on why measuring patient-reported outcomes and experiences will become important to your practice in the near future, watch our free Kickstarter webinar - Australian Health Reform: What it means for you and your practice here.

Further Reading:

ICHOM (International Consortium for Health Outcomes Measurement)

Selecting PROMs: Australian Commission on Safety and Quality in Health Care

Blog: The Fundamentals of Patient-Reported Measures.