Quality-of-life assessments view patients as partners in care

A by-product of efforts to increase patient empowerment and involvement in their own care is the use of quality-of-life assessments in evaluations of state Medicaid programs. Frank Funderburk, an analytic scientist with the Delmarva Foundation, which has been involved in quality improvement activities for more than 25 years, tells State Health Watch that the use of quality-of-life assessment builds on the work of Avedis Donabedian at the University of Michigan in looking at health care in terms of structure, process, and outcomes.

"It takes a patient-centered point of view that is consistent with patient empowerment and reflects the cumulative effect on an individual of various levels of observable effects of interactions within the health care system," says Mr. Funderburk.

The addition of quality-of-life assessments to overall evaluations allows health care system performance to be fine-tuned and encourages cost-effective performance, he says. It also allows system executives to target improvements that can cut costs.

"There is emerging literature that shows that both mortality and morbidity can be predicted from assessments of quality of life," Mr. Funderburk tells State Health Watch. "When you focus on quality of life, you can engage people in promoting their own health. This work is especially relevant to chronic diseases such as diabetes and HIV."

Some of the initial assessment work was done with people who have developmental disabilities. Outcomes indicators measure such data elements as physical well-being, mental well-being, safety, self-determination, and independence, looking at both the patient’s perspective and the organizational supports that are in place.

"We can model how well people ought to be doing and target the interventions that are the most appropriate," Mr. Funderburk says. "We’re heading toward using quality of life for health care improvement at the system level."

Lengthy interviews precede assessment tool development

Delmarva Foundation vice president Cindy Weinmann tells State Health Watch of an additional assessment tool developed through one-on-one interviews that lasted several hours each, looking at 25 measures of key domains. "We want to go beyond a person’s reported quality of life and assess the extent to which supports are present and whether other supports are needed," she says.

The various quality-of-life scales being developed look at more than patient satisfaction and the absence of disease, according to Mr. Funderburk. In addition, cultural context is important to achievement of a good measurement.

As the field develops, there are barriers to state use of quality-of-life assessments. Although physicians and other health care providers are trained to provide objective clinical evaluations of patient health status, many feel less comfortable when assessing the emotional and perceptual aspects of patient well-being referred to as quality of life.

The Delmarva team says if health-related quality-of-life assessments are to reach their full potential as a rational guide to health care delivery, experience has shown they must demonstrate their relevance to various constituencies in the health policy arena.

Don’t fall into trap of seeing assessment as a frill

Acceptance of health-related quality-of-life assessment would be enhanced by an understanding of the information needs of patients, providers, researchers, administrators, and policy analysts. Communication among researchers, administrators, and practitioners is essential if health care quality-of-life assessment is to become a useful tool in state health policy evaluations, Mr. Funderburk says. Too often, he says, people drop this sort of evaluation as a frill rather than seeing it as the ultimate quality issue and using it within budget constraints to allocate resources.

Mr. Funderburk gives one example of how quality-of-life assessments could be used for patients who have a chronic disease, such as hypertension. Patients who have chronic diseases often don’t take the medications that have been prescribed for them. In a quality-of-life assessment, researchers can ask what there is about a specific medication that causes people not to comply with their medication regimen. A key question on this assessment could be, "How can we help the consumer adjust to and manage lifestyle changes?" Through such questions, one can learn how patients’ goals often drive noncompliance with medication requirements. For instance, a patient who wants to be alert may not continue taking a medication that slows him or her down.

[Contact Mr. Funderburk and Ms. Weinmann at (410) 763-6275.]