Spotlight on Quality of Life Research

Spotlight on Quality of Life Research

What is Quality of Life Research?

Quality of Life (QoL) is the state of well-being that is made up of two components: the ability to perform everyday activities that reflect physical, psychological, and social well-being; and patient satisfaction with levels of functioning and control of their cancer.

Quality of life is a major concern of patients with cancer. Symptoms affect their QoL. Management of symptoms improves distress and QoL.

Quality of life is subjective so its measurement must include the patient’s perspective and be sensitive to change over time.

Patients’ quality of life has become a major objective of care in oncology. At the same time, it has become the object of increasing interest by researchers. Progress in oncology has enabled more patients to survive longer, so that cancer is increasingly often a chronic disease that requires long-term treatment that can have negative effects on patients’ quality of daily life.

Many clinical trials assess the effects of cancer and its treatment on quality of life. These studies measure aspects of an individual’s sense of well-being and ability to carry out activities of daily living.

Many trials include a quality of life assessment, especially if the trial is comparing treatments. It may be included as part of the main trial. Or it may be classed as a separate quality of life study (sometimes called a sub study).

It is important to find out how treatments affect people’s day to day life, rather than just focus on how well they work. For example, people will be more likely to continue with treatment if it has fewer side effects.

When taking part in a clinical trial, the research team will probably ask you to fill in some questionnaires. These will ask you about things such as anxiety, tiredness and pain as well as any side effects experienced and how you are coping with day to day life.

Most researchers will ask you to fill out a questionnaire before you start treatment. This is called the baseline questionnaire, and means the research team can see how your quality of life changes over time. As you progress with treatment you will probably be asked to complete more questionnaires as well as when you finish treatment. Each trial is unique so the number of questionnaires you are asked to complete, and over what length of time, will differ. Also, you may be asked to complete questionnaires regularly for some years after you finish treatment, possibly to monitor to for long term side effects.

Pain can be a problem for some people with cancer. The research team will want to know if your pain worsens or subsides as you go through treatment. Most quality of life questionnaires will ask you about any pain you may be having – sometimes requesting additional detail.

You may hear researchers use the terms PROs when talking about questionnaires in clinical trials. They are an important way to help improve treatment and health care.

PROs stands for patient reported outcomes. Researchers use PROss to assess how people rate their quality of life and how they are feeling.

ANZUP is fully committed to improving outcomes for urogenital cancer patients and helping drive forward research that is clinically meaningful and addresses what matters most to people and their families to enhance quality of life. Please talk with your doctor to see if there is a Quality of Life clinical trial suitable for you.