Research into shared decision-making is driving the way doctors talk to - and listen to - parents
by Tom O’Neill
The lanes of communication between pediatrician and parent were not always a two-way street. Or, for that matter, perfectly paved. Cincinnati Children’s is changing that.
Under the old, generations-tested formula, doctors explained medical options with gentle authority and families tried to comprehend and follow directions.
Today, improved treatment of chronic diseases that require committed family input – particularly the behavioral challenges of ADHD and autism – have helped push innovation. But as recently as a decade ago, national research on shared decision-making was limited, and what did exist focused not on outcomes, but the process.
That historical backdrop led researchers at Cincinnati Children’s to take a new look at an old dilemma, initiating studies on decision-making and family dynamics. In one 2011 study, published in Archives of Pediatrics & Adolescent Medicine, researchers used a validated measure to quantify the amount of shared decision-making observed in video-recorded office visits with parents whose children were newly diagnosed with ADHD.
The project revealed insufficient shared decision-making and potential disparities and barriers. It also reinforced earlier lessons from direct interviews with parents about biologic medications, from which a jarring truth emerged.
Drs. Ellen Lipstein, left, and William Brinkman have collaborated on a 2014 study in Medical Decision Making titled, “An Emerging Field of Research: Challenges in Pediatric Decision Making.”
“We were struck by just how emotional these decisions are for families,” says Ellen Lipstein, MD, MPH, of the Division of Adolescent and Transition Medicine. “In our first set of interviews, we were a bit unprepared. For instance, I didn’t know parents were going to cry. And these were parents of kids who are doing well now. But they still worried, particularly about side effects.”
Findings from this research prompted new approaches to communication in pediatric care.
Cincinnati Children’s began developing new educational videos, including parent testimonials, booklets and sets of information cards that clinicians use to better engage families. They saw that potentially complicated decision-making processes could be simplified, and parents could become co-owners of decision-making and more adept navigators of online resources. Equally importantly, providers could become better listeners. Now, researchers are digging deeper into how these new strategies can improve care for other chronic childhood conditions.
AN UNDEREXPLORED FIELD EMERGES
“This is decision-science,” says Bill Brinkman, MD, MEd, MSc, Director of Research in the Division of General and Community Pediatrics. His research projects involve a wide range of divisions, including Developmental and Behavioral Pediatrics, and Behavioral Medicine and Clinical Psychology.
“It’s one of the most fascinating parts of pediatrics, where we have the most to learn,” Brinkman says. “I think we’re just starting to scratch the surface. Every family dynamic is a little different.”
Family buy-in is crucial to the long-term treatment of such chronic conditions as ADHD, sickle cell disease, autism, arthritis and inflammatory bowel disease. Each can be managed. But behavioral modification and adherence can be tricky, and the science of it all is, as several researchers put it, “underexplored.”
“If you asked about the importance of families participating in decision-making 50 years ago,” Lipstein says, “I suspect the physician would have said, ‘No’ and the family would have said, ‘No.’ That speaks to the changing culture of medicine.”
Lipstein, Brinkman and colleagues recently published several papers that help establish why family decision-making deserves closer attention. One provided a stark review of the last half-century.
In 2012, in Medical Decision Making, the team examined a general lack of longitudinal data about family decision-making in pediatrics. Their review analyzed 52 previous studies in the U.S. dating back to 1989. Their search actually went back to 1966, but in those first 23 years, they found no studies on decision-making beyond topics like vaccinations and screening tests.
In subsequent studies, including in the Journal of Pediatrics, possible solutions came into better focus. Meanwhile, surveys of both parents and physicians helped Cincinnati Children’s better quantify their sides of the decision-making experience.
HOW LISTENING CAN LEAD TO HEALING
Decision making cards
Decision-making research at Cincinnati Children’s is revealing how much treatment outcomes can be influenced by being attentive to the highly fluid priorities of parents and children.
One day the key concern might be behavioral challenges or schoolwork. The next day, anxiety or adherence. Or an illness’ impact on siblings and friends.
Even the words used during a clinic visit can be a source of miscommunication. For parents, “long-term” often means their child’s lifetime. To an adolescent, “lifetime” might mean next week.
In 2013, Brinkman led a study published in Patient Education and Counseling that showed the effectiveness of decision-making cards for helping parents decide about treatments for ADHD, the most common childhood neurobehavioral disorder in the U.S.
The bright, 5-inch-by-11-inch cards were designed by the Cincinnati Children’s research team and graduate students from the University of Cincinnati’s College of Design, Architecture, Art, and Planning. They are light on text, heavy on images, and they provide information about everything from duration of a medication to negotiating the side effects to whether it is available in generic form.
Clinicians shared one set of cards with parents before clinic follow-up visits, which helped families drill down to subsets of concerns, allowing them to ask, “If we do this, how does it impact that?” Another set of cards were used to facilitate discussion during the visit. As a result, parents were more knowledgeable about options and more involved in decision making, but visits were not more time-consuming.
PARENTS BECOME EFFECTIVE RESEARCHERS
Becky Siler has two adopted sons, ages 10 and 7, who are being treated for ADHD at a Northern Kentucky pediatrician’s office associated with Cincinnati Children’s. At first, she resisted medication as a solution.
“We tried everything,” she says. “We tried behavioral things like reward systems, but it just wasn’t enough.”
Siler and her husband were swamped amid unfamiliar therapy choices. But her pediatrician, Mark Deis, MD, used the card system to help organize the family’s needs. Siler used it as a launch-point for her own online research. The boys are now on medication and doing well.
“It’s very easy to get overwhelmed by these things,” she says. “So it was a matter of picking and choosing what was important and what we could let go. And Dr. Deis, he always listens.”
Drs. Julia Anixt, left, and Lori Crosby focus on health issues in underserved communities; Anixt on ADHD and autism, Crosby on sickle cell disease.
NEW WAYS TO TACKLE OLD CHALLENGES
Lipstein and colleague Julia Anixt, MD, of the Division of Developmental and Behavioral Pediatrics, are part of a new generation of physician-scientists who see shared decision-making as a crucial element of health improvement, right alongside more traditional biological, psychological and social factors.
Anixt splits her time roughly evenly between autism research and clinical work.
“It’s hard because we can’t cure the autism,” Anixt says. “So we look at ways to address challenging behaviors. But no two kids have the same set of behaviors. Often, there is no single best answer.”
The best course might not involve medication but might require special training for parents and caregivers, working closely with teachers, and other intervention strategies. “These cards aren’t replacing the provider’s knowledge,” Anixt says. “They’re just helping families visualize the options so they can be informed participants in the decision making process.”
A CRITICAL GOAL: ESTABLISHING TRUST
Asking families to consider new or unfamiliar approaches to chronic conditions is rarely easy, but can be even more difficult in underserved, lower-income, minority communities where historic relationships with the medical world often have been strained.
Anixt focuses on improving those bridges. So does Lori Crosby, PsyD, a clinical psychologist in the Division of Behavioral Medicine and Clinical Psychology who works with families impacted by sickle cell disease.
She works to calm those undercurrents of distrust. Numerous studies have revealed disparities in how effectively providers connect with families of varying races and socio-economic status. That is changing.
“They say, ‘It’s so nice just to be listened to,’” Crosby says. Still, new treatments require a leap of faith.
Cincinnati Children’s has become a leader in encouraging more children with sickle cell to begin taking hydroxyurea, a beneficial treatment, at younger ages, even as young as 9 months. Once reserved as a treatment for older, sicker patients, a major shift occurred last year, when the National Heart Lung and Blood Institute terminated a clinical trial of the drug because it so clearly demonstrated its ability to reduce stroke risks and pain.
It was a huge scientific validation of the effectiveness of hydroxyurea, which was originally developed as a cancer drug. Although hydroxyurea has been studied in treating sickle cell for over 20 years and has an FDA indication, only recently has information about the treatment spread among the sickle cell community.
“This can be a scary treatment because it’s a chemotherapy and we can’t tell parents what that’s going to mean 40 years down the line,” Crosby says. “We don’t know. So we’re asking them to make a decision without knowing what the future holds.”
When doctors say the medication can ease pain and reduce risk of organ damage and stroke, parents wonder if the medicine is too new to be trusted, or too good to be true. The two-lane approach to communication has made a difference.
“There was a light-bulb moment for providers,” Crosby says of this decision-science. “We had no idea how unprepared parents were. We didn’t understand how overwhelming this is.”
We do now.
Cincinnati Children’s fueling new insights
The card system study and other decision-making projects received support from the Cincinnati Children’s Place Outcomes Research Award and the medical center’s Center for Education & Research on Therapeutics (CERTs). Both programs support innovations to improve healthcare delivery outcomes.
These and other internal grant programs often provide the initial support needed to develop a good idea into a project capable of earning highly competitive NIH grant funding. Indeed, preliminary data generated from these initial projects led to grant funding from the National Institute of Mental Health, the National Institute of Child Health and Human Development, and the Agency for Healthcare Research and Quality.