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Novel Evidence-based Approach Replaces Traditional HRQOL Measures With Those More Aligned With 'Real-World' Needs

โ€“ Innovative 3-pronged approach amplifies RCC patients' personal stories, triumphs, setbacks, and goals


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In the modern era, oncologists have an armamentarium of several real-world treatment options and opportunities for patients suffering with advanced renal cell carcinoma (RCC). As an oncologist specializing in genitourinary malignancies, I have witnessed the treatment landscape evolve dramatically, especially in the past decade. This is in stark contrast to just two decades ago when there were only two major oncolytics: sunitinib and sorafenib.

With the advent of immunotherapy and combination therapy with newer classes of tyrosine kinase inhibitors (TKIs), we have the relative luxury of having several more selective, targeted options to choose from, ushering in the paradigm of personalized medicine in RCC as well as a promise for a longer lifespan and health span in the face of an illness that remains incurable, but hopeful. However, to truly harness the power of these therapies, we must equally understand and manage the known toxicities, including financial toxicity, of the treatments to make the journey more tolerable.

To this end, it is particularly encouraging to see studies like the one by presented at the 2024 ASCO Genitourinary Cancers Symposium. This group sought to reimagine health-related quality of life (HRQOL) questionnaires for RCC patients in order to more accurately depict the true extent that these patients were able to recapture their lives during the cancer journey.

Patients with a diverse range of demographic variables, with 84% undergoing some form of immunotherapy and/or targeted therapy, were selected to participate. Using an innovative three-pronged approach, the researchers allowed patients to take the first pass at items included on established HRQOL measures, concurring on 10 items that provided some relevance to their own treatment journeys (phase 1). In phase 2, disease experts reviewed and refined these items to a 12-item questionnaire.

Finally, a compiled, curated version was generated, including non-cancer-specific items spanning three emotional queries and four physical queries, which was presented to patient advocates including caregivers for feedback, resulting in a final consensus on the inclusions and exclusions (phase 3).

While further validation is necessary in larger populations and trials, I applaud the novel yet evidence-based approach of this group to replace traditional measures with those that seek to be more relevant and in alignment with patients' and caregivers' specific "real world" needs and experiences.

By keeping the patient in the equation, they create the opportunity to amplify patients' personal stories, triumphs, setbacks, and goals. Such a tailored approach involves the regular practice of discovering and maintaining a clinician's fundamental skills of humanity and empathy, thus empowering the person behind the illness and giving him or her the opportunity to shine through any diagnosis, setback, or outcome.

Indeed, as we move forward towards better tools, treatments, and technology in the management of advanced RCC, we must advocate for new approaches that balance the efficacy and tolerability of treatment to create durability, which is fundamental to enabling a cancer journey, pacing our patients for a sustainable marathon instead of a sprint.

In doing so, I hope we can move closer to the late Dr. Francesca Thompson's famous quote that one day "Cure is growing old and dying from something else."

, is a physician-scientist, educator, author, and speaker, who is involved with cancer care, personalized medicine, and innovation in healthcare. At Palomar Health Medical Group in San Diego, he is the Director of Oncology. He also serves as Alumni Specialty Director at the Cleveland Clinic Lerner College of Medicine and as Clinical Instructor at the University of California San Diego. You can also find him on and .

Read the study here and an interview about it here.

Primary Source

Journal of Clinical Oncology

Source Reference:

ASCO Publications Corner

ASCO Publications Corner