May 13 2025
Written by Michele Harmon, RN, BSN; Administrator, Southeast Clinical Oncology Research Consortium; SCOR, NCORP
The World Health Organization (WHO) defined health as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” This definition is from 1948. In oncology, we care for the health of our patients. Part of health care delivery is to focus on how treatments alter the quality of life for our patients. Is this important information? It did not used to be discussed. In early medicine, only physicians asked the questions and developed the plan of care. Patients nor their family members questioned what was prescribed by the physician. However, in more recent years, medicine has evolved as patients take it upon themselves to be more educated about their health and treatments for their diagnoses. Patients and family members (patient advocate) are encouraged to ask questions and seek out physicians for their expertise about treatment options. The patient is an active participant in their plan of care. With this comes an increased need for patient involvement in their Quality of Life (QOL), as this has a direct correlation with the proposed treatment.
Quality of Life is defined as a concept which aims to capture the well-being of both positive and negative elements that encompass a specific time point. WHO goes further to interpret QOL as a subjective evaluation of one’s perception of their reality relative to their goals as observed through the lens of culture and their value system. In summary, QOL is specific to each patient. Providers, physicians and other health care professionals decide if the current treatment will continue or need to be discontinued. This is based on the providers grading of patient reported toxicities.In today’s practices, oncologists have come to realize that their own perception of a patient’s QOL is not always accurate. Hence the introduction of Patient Reported Outcomes (PRO).
Now that the historical background is complete, let us move to why it is important for QOL and PROs to be part of our oncology protocols:
- To have tools that assess how an individual’s ability to perform activities of daily living (ADLs) is affected by prescribed treatments (e.g., medications, physical therapies, assistive devices).
- To validate such tools to be confident in the data they produce.
- The data from validated tools may direct treatment options such as dosage, timing, and the sequence to which future treatments are given.
- Collection overtime is important as treatments often alter an individual’s tolerance to cancer therapies or concurrent medications. Continued collection of this information in follow up can provide important insight to the potential resolution of symptoms seen while on treatment. For example, cardiac monitoring for Anthracycline regimens or TSH monitoring for immunotherapy regimens.
It is essential to realize that QOL measures differ from PRO measures. QOL measures encompass a broad spectrum of health-related issues while PRO measures capture the essential reason that defines how severely this impacts the patient’s QOL. Many times, the PRO is a better tool to incorporate for real time treatment decisions. It not only reflects how a patient defines tolerability, but it is a true measure for providers to gauge further treatment decisions. Sometimes in protocol assessments, QOL clusters do incorporate PROs.
NRG developed a PRO Compliance team that reviews QOL/PRO compliance. That team has been tasked with ways to improve data completion. In 2024, Kandie Dempsy and Marcie W. Ritter presented their first report at the NRG Winter meeting. The presentation slides, along with detailed QOL and PRO frequently asked questions, are available on the NRG website.
QOL and PRO measures are a vital part of oncology research today because of the patient centered care in the oncology research model. If the patient does not have a platform to convey how treatments affect their daily routines or counteract/ interact with concurrent medications, then we continue to let down the patients that come to us for help. The next time that you ask a patient to complete a QOL or PRO, perhaps for the hundredth time, remember why the questions are important and ask in a positive way. A gentle reminder, that this may not only help them but the next person that will take the same treatments, can go a long way.