Rita Mangione-Smith is exploring the impact of healthcare on patients’ physical, emotional and social well-being.

Mangione Smith 220x145 It’s the ultimate question for any patient, any doctor, any hospital – and anyone concerned about the rising cost of healthcare in the United States.

It’s also a question that Seattle Children’s Dr. Rita Mangione-Smith is starting to answer with her research.

“We want to know how our patients are experiencing life, and if the care we provide makes a difference,” she says. “In many ways, a patient’s perceived health matters more than my assessment of their health as a doctor.”

Mangione-Smith’s team invites parents – and patients over age 8 – to respond to a survey called the PedsQLTM shortly after admission to the hospital and then a second time two weeks after they go home.

The PedsQL focuses on a child’s physical, emotional, social and school functioning. It covers the kinds of topics that are top of mind for any parent. Is their child getting teased? Does their child feel sad or worried? Does their child have any problems doing chores or participating in physical activities?

Mangione-Smith’s first step was to see if this survey — which has been tested and used extensively with outpatients — would provide meaningful information about inpatients.

“We have shown that it is feasible for families to complete this kind of survey in the hospital and that it’s a good way to measure the effectiveness of care,” she says. “We also found that it is sensitive enough to detect even subtle changes, which is important since we want to see if a child’s quality of life improves as a result of the care they received in the hospital.”

Are quality improvement efforts making a difference to patients?

With this first phase of testing under her belt, Mangione-Smith is now ready for an even more ambitious endeavor: using this survey to see if efforts to improve care are having positive impacts on patients’ health.

“The biggest frustration for researchers who evaluate quality improvement initiatives is the lack of good outcome measures,” she says. “When we try out a new approach to care, we generally rely on process measures to see if implementation was successful. But the next step is to see if that new approach improves patient outcomes, such as health-related quality of life.”

Hospitals have typically measured processes such as the wait time to get an appointment or the amount of time between ordering a medication and giving it to a patient. While these kinds of measurements are certainly important, they don’t help doctors — or entire hospitals — understand if their efforts actually improve patients’ health.

In light of the research led by Mangione-Smith, Seattle Children’s is poised to use the PedsQL survey on all inpatient units to help measure any efforts to improve care. While many investigators have used the survey for individual research projects on particular diagnoses, she is the first to implement the PedsQL as a routine part of every hospital admission.

Rita Mangione-Smith is the first to use PedsQL as an outcome measure in inpatient care - and the impact of her ongoing research will go far beyond Seattle Children's.

Comparing quality of life before and after changing care

Mangione-Smith’s vision is for doctors at Seattle Children’s to look at health-related quality of life data whenever they change the approach to care for a particular diagnosis, like asthma. They will be able to use the survey to compare the quality of life reported by asthma patients who received care before and after the change to see if the new approach makes a difference.

The number of potential uses of the data collected with this survey is mind-boggling, even for Mangione-Smith. Other researchers from around the hospital have already come knocking on her door to gain access to her rapidly growing database, which is a researcher’s goldmine.

“The sky is the limit,” she says. “As we expand to other areas of the hospital this year, researchers will be able to look at questions related to pain management, surgical outcomes, medication effectiveness, mental health – you can explore the impact of any kind of care we provide.”

Measuring quality at the national level

Mangione-Smith is the first researcher to use this pediatric survey as an outcome measure in inpatient care, and the impact of her ongoing research in this area will go far beyond Seattle Children’s.

“The healthcare reform legislation is full of references to assessing, improving and measuring quality of care, and to holding healthcare organizations accountable for outcomes,” she says. “Being able to measure whether healthcare is having the desired effect on quality of life is one of the most important dimensions of quality.”

Measuring quality in pediatric healthcare and tracking outcomes are is currently voluntary for healthcare organizations. However, the Centers for Medicare and Medicaid Services (CMS) are expected to begin holding healthcare organizations accountable by tying reimbursement to quality and outcomes, thus highlighting the importance of measure these indicators.

$8 million grant from AHRQ will further work

In the field of pediatrics, the same legislation that extended Medicaid coverage for children — the Children's Health Insurance Program Reauthorization Act (CHIPRA) of 2009 — also called for improving and expanding measures of quality in pediatric healthcare.

Mangione-Smith recently received an $8 million grant from the Agency for Healthcare Research and Quality (AHRQ), which is overseeing the development of these measures. The grant will fund a Center of Excellence on Quality of Care Measures for Children with Complex Needs based at Seattle Children’s.

Her team — which includes investigators from four other research institutions and children’s hospitals — will develop measures to assess care for children with special healthcare needs and to evaluate the quality of pediatric mental health care.

Mangione-Smith chose these two areas of focus because rigorous, standardized measures were lacking in a core set of measures already identified by CHIPRA. She will build on her recent work assessing health-related quality of life and expand the scope of her research to assess the coordination of services for children in locations such as medical homes, specialty care sites and schools.

“Children with special healthcare needs and mental health conditions access services in multiple settings, and we all need to work together effectively if we want to improve their health and quality of life,” she says. “Developing quality measures to evaluate the coordination of care and the impact of different services on children’s health is the first step toward defining expectations at the national level and holding organizations accountable.”