Heal Thyselves: What Research Teaches About Adherence to Treatment

"We know behavior change is hard. We’re asking providers, kids and families to change their behavior. All of these things are hard." – Dr. Maria Britto

Sometimes, saving lives is not about discovering a medication, inventing a diagnostic tool or developing a better surgical technique.

Sometimes, saving lives is simply about making sure each child receives the best treatment that we already know how to provide.

Yet as researchers and clinicians know, huge gaps exist between identifying best treatments and putting them into widespread, everyday use.

Now, experts in health quality improvement at Cincinnati Children’s are demonstrating what it takes to close that gap with a long-term project to improve self-management for childhood chronic disease.

Achieving successful self-management — the patient’s willingness or ability to manage his own illness — has been a challenge in health care for many years. In fact, researchers say as many as 50 percent of children with chronic illness and their families do not fully follow their doctors’ advice. They skip their medications, drop out of therapy, and give up on making vital lifestyle changes.

The human toll and financial cost of poor adherence can be immense. When symptoms go undertreated, more children wind up needing expensive emergency services and hospital admissions, says Maria Britto, MD, MPH, and director of the Center for Innovation in Chronic Disease Care at Cincinnati Children’s.

“Anywhere between 10 and 20 percent of kids have a chronic condition, particularly when you include mental health conditions,” Britto says. “It’s the minority, but they disproportionately use health care resources. So for a hospital like ours, kids with chronic illness make up a disproportionate share of the patients we care for.”

Therefore, breaking the cycle of poor adherence offers great potential to improve outcomes and to help control rising health care costs.

Doing it Right Every Time

In March 2007, Cincinnati Children’s published the first national guidelines to address self-management in chronic care. An implementation team has been working to put those guidelines into practice at Cincinnati Children’s, which has more than 12,000 employees working at a dozen locations in Greater Cincinnati and more than 1 million patient encounters a year.

Getting such a massive organization to adopt a new care guideline is a process that takes years to accomplish and requires deep, system-wide commitment, Britto says.

“Lots of people have done work in self-management support,” Britto says. “What we are doing differently is saying, ‘We are not going to make this just a research study, or to show how just one clinic is doing things, but this is how Children’s Hospital is going to do best-evidence and best-practice to really improve outcomes.’”

Taking on best practices in self-management is one of many quality improvement projects Cincinnati Children’s has launched since beginning its Pursuing Perfection program in 2001. It is also one of the most difficult tasks the medical center has undertaken.

“We know behavior change is hard,” Britto says. “We’re asking providers, kids and families to change their behavior. All of those things are hard.”

Breathing Easier

But change is happening. Some of the strongest results have emerged at Cincinnati Children’s Asthma Innovation Lab.

Since the innovation lab began tracking key measures of evidence based care for asthma in 2007, the team reports that more than 95 percent of asthma patients are receiving key elements of care. That means the severity of their illness is fully documented, patients with persistent disease are receiving controller medications, and they have worked with their doctors to develop written action plans to manage their conditions.

Meanwhile, 84 percent of asthma patients are receiving all the key components of the medical center’s self-management program. That includes standardized assessments of what families know about their child’s illness and prescribed treatments, employing collaborative, culturally competent methods to address gaps in knowledge, developing written action plans to change behavior, and providing regular followup support.

Over time, these efforts have contributed to improved outcomes, Britto says.

In fact, the percentage of patients at Cincinnati Children’s with “well controlled” asthma has tripled from about 9 percent in March 2007 to about 31 percent as of November 2009.

“We’re slowly starting to see a growing proportion of kids who are well-controlled. First the team has to get good at it, and then the patients have to get good at it,” Britto says. “Working your way through that takes time.”

Teaching providers to help families get better at self-management is neither easy nor quick.

“It’s about changing the system to support improvement,” Britto says. “Your electronic medical record needs to include ways to track self-management. The flow of your clinic needs to include a role for somebody to work on behavior change. The physician may not always be the best person to do this. In many cases, it’s a nurse, a social worker, or even a parent trained as a paraprofessional. It’s about creating a system that has a team with clear roles.”

“That’s what the collaborative is about. It’s about working together to figure out how to make the changes work in your practice,” Britto says. “Who’s going to ask the child to fill out the form? How’s it going to work? Who’s going to follow up?”

To address these issues, staff at Cincinnati Children’s are participating in “learning collaboratives.” During sessions held over several months, trainers teach better ways to communicate with patients who struggle to stick to their regimens.

The training makes a real difference, says Carolyn Kercsmar, MD, director of Cincinnati Children’s Asthma Center. She and several staffers completed the program in the summer of 2009.

Beyond the center: Dr. Peter Margolis leads a national effort to improve self-management for teens with Crohn’s disease.

Ask, Don’t Tell

“As physicians, we’re fixers. We just tell patients, ‘Here’s what you need to do,’” Kercsmar says. “But we know that doesn’t always work.”

Now, instead of lecturing patients about the consequences of skipping medications, Kercsmar and others conduct motivational interviews. This non-judgmental communication method focuses on getting patients to discuss what they are thinking about and what is going on in their lives when they miss a dose.

Kercsmar says she already is seeing the benefits of the new approach. She recalls working a few months ago with a girl who had suffered complications from her asthma that could have been avoided had she been following her treatment regimen.

“She had a million excuses for skipping her medications. But when we sat down and talked, she finally opened up. She talked about things we never discussed before. And by the time we were finished, she indicated she was ready to make a change,” Kercsmar says. “She and her mother came up with some strategies that she felt could work for her. She developed a written action plan and our nurses followed up to see how things were going. She is doing much better now.”

Beyond the Medical Center

In addition to implementing the self-management guideline, Britto and other colleagues in the Division of Health Policy and Clinical Effectiveness are promoting quality improvement in several other ways.

As president-elect of the Society for Pediatric Research, Britto plays a role in setting a national agenda for quality improvement. “We can make sure that we do improvement scientifically and make sure that our improvements are part of the pediatric research discourse,” she says.

Fred Ryckman, MD, clinical director of the Division of Pediatric Surgery, works at the state and national level to reduce surgical site infections. Peter Margolis, MD, PhD, co-director of the Center for Health Care Quality, leads a national effort to improve self-management for teens with Crohn’s disease via the ImproveCareNow network.

For the past five years, Britto, Margolis and Lloyd Provost, an advisor to the health policy division, have taught a nine-month course called Advanced Improvement Methods. The class is building a cadre of highly trained pediatric researchers at Cincinnati Children’s and several other centers nationwide who are advancing the science of quality improvement, Britto says.

Meanwhile Cincinnati Children’s strives to be a thought leader on the issue of quality improvement, with division director Uma Kotagal, MBBS, MSc, and other faculty members giving presentations to organizations seeking to improve quality.

“Part of our role in the academic pediatric research world is to say, ‘There is a science to achieving improvement. Here’s how you can be scientific about it,’” Britto says.