Quality of life is a measurement tool more closely tied to major trials than day-to-day practice. As with other techniques, QOL is beginning it move to the mainstream.
Quality of life (QOL) is a measurement tool more closely tied to major trials than day-to-day practice. As with other techniques, QOL is beginning it move to the mainstream.
“Quality-of-life issues are especially important in oncology because of the toxicity potential of the treatment and the life-threatening nature of the disease,” says Michele Halyard, MD, associate professor of oncology in the Department of Radiation Oncology at the Mayo Clinic in Scottsdale, AZ. “It’s importance to clinical practice has been emphasized by the American Society of Clinical Oncology, which designated QOL second in importance only to survival.”
Quality of life can be broken down into four basic areas. They include (1) health and functioning,(2) psychological and spiritual, (3) social and economic, and (4) family. These are often further broken down into very specific components such as pain, depression, and energy levels.
“There is increasing data that QOL, particularly in advanced cancer, is prognostic for survival,” says Halyard. “This is over and above things that we used to rely on, such as stage, tumor size, performance status, and weight loss. It appears to be an independent prognostic factor.”
As the data on QOL has matured, it has become more apparent that these measures also are useful in informing both the physician and the patient about the tradeoffs involved in therapy.
“We used to think that toxicity and quality of life were equivalent,” says Halyard. We are finding that these are two very different entities.”
To illustrate, Halyard points to the case of a 60-year-old male with metastatic pancreatic cancer who is looking at various therapies and their side effects. Nausea and lowered energy levels might very well impact on his overall health status and functioning domain. Certain changes in the body could make a difference in his psychological/spiritual life. Costs and fatigue might affect his social/economic domain. Sexual side effects might have devastating effects on the family.
Halyard stresses that the relative importance of these factors are very individualized. One patient might shrug off the sexual side effects as not being all that big of a deal when weighed against other factors. Another may consider it a reason to forego treatment.
“This opens another important point of discussion,” she says. “Physicians and other healthcare providers now have more information based on data to say how an intervention may impact a patient’s QOL and functioning both during and after treatment, thereby educating and helping them in the decision making process. All of us as physicians want to give our patients as much information as we can.”
Halyard sees two major impediments to wide-spread use of QOL in every day practice, no matter how useful it might be. One is acceptance of the usefulness of QOL data by the physicians. She thinks this problem is subsiding as more and more studies show the utility of the information.
Perhaps a higher barrier is the perception that QOL measurements are very time- and personnel-intensive, and thus costly to the practice.
“I don’t know that the average practicing oncologist is going to have the time or the inclination to do a full QOL assessment of every patient,” Halyard says. “There are some, like the 12 question Linear Analogue Self Assessment (LASA) or the Brief Fatigue Inventory, that could be filled out in the waiting room and scored before the patient sees the doctor.”
In general, even the shorter questionnaires would give practitioners insights into which issues need to be addressed by the physician and staff. In addition, it allows for more efficient use of clinical time by helping to establish priorities for patient-physician discussions.
“If someone has an interest, there are a number of easy instruments available that they can use in their practice,” Halyard notes.
However, entering into systematic QOL assessment as a routine part of day-to-day practice is not necessarily a turnkey operation. One of the first hurdles is matching the tool used to get the information they want to obtain from the patient with the needs of the practice and the resources available. Larger groups might have the computer and staff infrastructure to institute a longer, more comprehensive survey than a single-provider office.
Among the places Halyard suggests to get information on validated instruments is the European Organization for Research and Treatment of Cancer QOL Questionnaire (www.eotrc.be/home/qol), Functional Assessment of Cancer Therapy (www.facit.org), The RAND Corporation (www.rand.org/health/surveys_tools.html), and the Patient-Reported Outcome and Quality of Life Instruments Database (www.qolid.org).
These have all been validated by research. Halyard stresses that homegrown questionnaires are to be avoided.
After deciding which instrument to use, training the practice on how to score the surveys and what the results mean is crucial. “To avoid misinterpretation of the patient’s responses, it is important to know that there is a learning curve associated with proper use of QOL surveys,” says Halyard. “This is no different than learning how to properly interpret laboratory data in medical training.”
QOL assessment is an evolving field, especially as it applies to routine practice in the community. Research is ongoing to narrow down the value-added and to simplify its use.
“We want more clinicians to use QOL data, especially given the already proven advantages,” says Halyard. “The important thing is to not give up if it isn’t easy in the beginning, and refine your use over time.”