Improving Patient Care: Defining What Basic Care Should Be for People with Lupus

In March, the first set of quality indicators ever developed for the treatment of systemic lupus erythematosus was published in the journal Arthritis & Rheumatism.

The new guidelines aim to ensure that each person with Lupus gets basic kinds of care: treatment and education for bone loss if they’re on corticosteroids; education about sun avoidance; and monitoring for drug toxicity if they’re on NSAIDs, corticosteroids or DMARDs, to name a few of the 20 new indicators.

If clinical practice guidelines are meant to be the ceiling, or the optimal care doctors should provide for a given condition, then quality indicators are the floor, explains Jinoos Yazdany, MD, MPH, of the University of California of San Francisco, who coordinated the development of the guidelines with support from an Arthritis Investigator Award from the Arthritis Foundation.
Quality indicators had been published for rheumatoid arthritis, gout, and osteoarthritis, but there was nothing in the literature for lupus.

“It’s one of the diseases that has the greatest disparities in health outcomes,” Dr. Yazdany said. “That’s why we embarked on this project to see if we could define minimal quality of care and hopefully eliminate some of those disparities.”
Interest in the quality of care being delivered to patients sharply intensified a decade ago with the release of the national Institute of Medicine’s seminal report, “To Err is Human”, which estimated that as many as 98,000 people die each year because of medical mistakes.

Since that time, quality indicators have become important ways to score health care delivery.
Dr. Yazdany felt compelled to tackle the project after her experiences treating patients in two very different clinical settings: a university rheumatology practice and a county hospital.

“In both settings, my clinical observation is that the care is very uneven,” Dr. Yazdany said. “Because the prevalence is low, any given physician may not have a lot of experience managing it.”

Lupus, by its nature, is often challenging to treat. It is a chameleon of a disease, with symptoms that can ebb, be vague or mimic other conditions. These qualities have earned it the nickname, “the great imitator.”

For example, she said many patients were on high-doses of that medication for months and sometimes years without ever being reassessed to see if they could take less. Many were not receiving appropriate adjunct therapies, such as ACE inhibitors if they had significant protein their urine from renal disease, or blood pressure reduction if they had renal disease.  Some were not receiving appropriate counseling regarding how medications they were taking might affect the development of a fetus, which is a big issue in lupus, since most patients are young women of reproductive age.

To compile her list of quality indicators, Dr. Yazdany combed the medical literature for interventions that could be considered basic care. She identified 20 potential candidates for inclusion in the set. She then convened a panel of 8 experts to serve as an advisory panel to review her suggestions. After their meeting, the list of possible candidate statements grew to 29 statements. Then a team of reviewers gathered scientific evidence in support of each of the statements. Finally she asked a new panel of nine experts, to rank each of the statements for validity and feasibility on a scale from 1 to 9. After some final analysis, the list was culled to 20 indicators relating to 5 areas of lupus care: diagnosis, general preventive strategies, osteoporosis, drug monitoring, and renal disease.

So far, she says, the response from colleagues has been positive, though she is well aware that many doctors aren’t thrilled by the idea of using quality indicators.

“In general, there’s sort of a climate right now where a lot of physicians think that insurance companies and other payors are creating extra work, and rating physicians on things they think are not very important,” Dr. Yazdany said.

“I think what I wanted to do was to put aside some of those concerns and find out what’s best for patients,” she said.

Read the other articles in the July/August issue of Research Update:

Stem Cells Grow New Joints
A Pill May One Day Preserve Cartilage
The Role of Fat in OA
Health Care Reform: A Proven OA Treatment is Cost-effective