Unlocking Patient and Caregiver Partnerships in Obesity Research: ObesityWeek 2017

As researchers dive into the details of obesity science, they are learning that, like most mechanisms of the human body, obesity is a result of myriad factors at play. In simpler terms, if the relationship between excess weight and the human body were to have a Facebook status, it would almost certainly be: “it’s complicated.”

PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative, has been an integral component in unlocking what we don’t know about obesity. At ObesityWeek 2017, an international event focused on the science, clinical application, surgical intervention, and prevention of obesity, PCORnet colleagues showed attendees the latest research they’ve uncovered. Many PCORnet representatives were part of ObesityWeek, which took place on Oct. 29 to Nov. 2 in Washington, D.C. However, this recap will focus on how patient, caregiver, and other stakeholder partnerships have informed two important PCORnet demonstration studies: the PCORnet Obesity Observational Study: Short-and Long-term Effects of Antibiotics on Childhood Growth (ABX) and the PCORnet Bariatric Study.

ABX: How Will Parents Respond?

Parents and pediatricians often reach for antibiotics to treat middle ear infections, strep throat, fevers and other common ailments of childhood. But some research suggests that doing so increases those children’s risk of obesity in early childhood. The ABX Study is using PCORnet’s vast network to tap routinely collected medical data from nearly 700,000 children. The study has looked at the relationship between these children’s weight trajectory and early antibiotic exposure.

At ObesityWeek, Jason Block, principal investigator of the ABX study, shared that ABX established a cohort, or group of patients, that were exposed to antibiotics under the age of two and tracked their weight at the age of five. He presented initial results, and the study team’s next steps to explore the relationship between antibiotic use and weight gain to determine how growth patterns vary by subgroups. Final study results are expected soon.

Bill Heerman, also presented on the results of a focus group that relates to the ABX study. His research asks: even if early exposure to antibiotics does raise the risk of obesity, would parents withhold the medication? His team conducted eight focus groups at four PCORnet sites to find out. The answer? In a nutshell, probably not. In a setting of acute illness for their children, the long-term impact of obesity is not a major factor in parent decision-making. Parents placed greater value on the short-term comfort of their children than the longer-term potential risk of obesity, especially if the risk was small.

The Bariatric Study: What are Patients’ Communication Preferences for Long-Term Weight Loss Surgery?

When it comes to bariatric surgery, a type of surgery intended to achieve weight loss, it turns out that one size definitely does not fit all. PCORnet’s Bariatric Study is comparing the health benefits and safety of the three main types of weight-loss surgery patients commonly undergo today: roux-en-y gastric bypass, adjustable gastric banding, and sleeve gastrectomy. Leveraging the PCORnet Common Data Model to organize data into a standard structure, the Bariatric Study is collecting health data from thousands of adults and hundreds of adolescents who underwent bariatric surgery in 2005 through 2015. The study is following these patients for up to five years after surgery to estimate the one-, three-, and five-year benefits and risks of each procedure. Why do we need this study? Just ask the patient co-principal investigator for the Bariatric Study, Neely Williams, who explained what it was like to be part of a diverse patient community seeking bariatric surgery in her opinion editorial in The Tennessean.

At ObesityWeek, Co-Principal Investigator David Arterburn, presented some of the initial results of the Bariatric Study. Specifically, he and his study team offered preliminary insight into which surgical procedure—roux-en-y gastric bypass, adjustable gastric banding, or sleeve gastrectomy—resulted in the most long-term weight loss based on an observation of more than 46,000 adults. Final study results are forthcoming.

Another key aim of the PCORnet Bariatric Study is to uncover patients’ communication preferences around 1) the risks and benefits of bariatric surgery; 2) which bariatric procedure to use; and 3) the optimal follow-up care after bariatric surgery. The study team is interviewing surgeons about their preferences, too. At ObesityWeek, key partners in the Bariatric Study, including the Obesity Action Coalition, organized “empathy exercises” to share some of what they have learned, allowing people to better understand some of the quality-of-life issues faced by people with obesity. They also hosted and participated in a weight bias Tweet Chat, asking patients and researchers to talk about obesity stigma and how it affects care decisions and delivery.

ObesityWeek was a success, offering many PCORnet colleagues a chance to involve patients, parents, and the larger research community in their work—a core tenet of PCORnet’s mission. If you missed the event, but would like to join the conversation, follow #OW2017 online. In addition, check back here for study updates and results.

 

 About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

 About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.