Since its creation in 2009, the Pediatric Obesity Weight Evaluation Registry (POWER) has endeavored to accumulate clinical data from individual comprehensive pediatric weight management programs around the United States for overweight and obese youth. The end goal is to create a useful database that will inform research for years to come. ABOM Item Writing Committee Member Dr. Brooke Sweeney has been part of the POWER team since the beginning. Below, she answers questions about her involvement, the project’s progress, and how other obesity medicine physicians can take part.
How and why did you get involved in the POWER project? I have been involved in POWER since its formative stages back in 2009. I was fortunate to participate in Focus on A Fitter Future (FFF), a five-year initiative (2008-2013) sponsored by the Children’s Hospital Association to articulate the role of children’s hospitals in combating pediatric obesity while building consensus on performance measurement and quality improvement. One workgroup within FFF developed a plan to launch a registry of the patients coming to Stage 3-4 weight management programs. Those of us involved felt we needed a robust multicenter group collaborating to address the complexity of factors including genetic, etiologic, protective, and risk that drive onset of obesity, severity, and response to treatment. Inspiration was found in the experience of the Children’s Oncology Group collaborating on protocols to continuously study and improve the treatments for childhood cancer, working in a multisite fashion. Similar to the success that has been discovered for treating childhood cancer through this collaboration; the field of pediatric obesity medicine was in need of a registry.
What did it take to develop this large-scale effort? Our initial step was to develop a pilot project to analyze retrospective data from multiple sites. Jasik, et al 2015 describes the outcome of this effort, describing baseline data on children presenting to 13 Stage 3 weight management programs across the country from 2009-2010. Development efforts included developing a business plan, interviewing vendors to support the data collection and analysis, agreeing on data elements, seeking IRB approval from each site, and then cleaning and analyzing the database. Once we had proved it was possible and other Stage 3-4 Weight Management Programs were interested, we were ready to work on launching a prospective multi-center patient registry in the United States to help youth and families with this disease.
The POWER study group developed governance documents and structure. The data coordinating center at Cincinnati Children’s Hospital Medical Center was selected due to the range of services they could offer, their effective support of the retrospective POWER project, and the cost was able to be kept at $5000 per site for the first 30 months of the project. Dr. Shelley Kirk, PhD, RD, LD is the PI and she supports all the efforts, including 7-10 monthly webinars, individual site support, and project guidance with a flair for assuring fairness while encouraging site and individual strengths. We are now just entering year three of the project and we have 34 sites involved, near 3600 patients consented into the registry, 65% with 2 or more visits, 82% with lab values and 53% with 2 sets of lab measurements. We have just submitted our manuscript on the development of POWER for review, and we have 2 other publications in progress at this time.
How has POWER already contributed to obesity research? The registry was conceptualized as a vehicle for answering challenging questions through collaboration, which allows for significant learning and discovery of best clinical processes. The registry offers a standard framework to collect data from many different programs with varying designs, levels of intensity, and staff makeup. We are able to describe the baseline characteristics of patients showing up to pediatric weight management programs across the country and look for any differences by region. We are also interested in looking at typical outcomes and weight management, including change in weight, BMI and percent of the 95th percentile for BMI as well as markers of cardiovascular risk including blood glucose, HgA1C, lipid profiles, liver function, and blood pressure for improvements in these markers and how they relate to changes in weight or BMI.
How could this effort contribute to obesity research in the future? In the future, we are planning to begin having subsets of the group implement specific protocols to answer new research questions. Screening for adverse childhood experiences, psychological comorbidities, and food insecurity are common to some sites but not others. We plan to look for ways to better evaluate and treat these factors that may be influencing the success of children enrolled in a weight management program. A group is interested in using medications to treat weight in children to begin to fill the gap between intensive lifestyle treatment and then bariatric surgery. We are interested in helping to inform the knowledge base of additional more intensive strategies already used in adults, but not at this time available to children.
Is there a way for other physicians to get involved? POWER is currently open to new sites interested in joining the registry. The fee is $6000 for the next two-year cycle, which begins July 1, 2016. Click here for information about enrolling. The experience of being in POWER has offered benefits in collaboration and learning from colleagues across different sites working to care for this challenging population, developing a resource to track our data in a systematic way and having the opportunity to develop and participate in new research projects supporting the care of children with severe obesity.
1. Jasik, C. B, King, E. C, Rhodes, E, Sweeney, B, Mietus-Snyder, M, Grow, H. M, Harris, J. M., 2nd, Lostocco, L, Estrada, E, Boyle, K, Tucker, J. M, Eneli, I. U, Woolford, S. J, Datto, G, Stratbucker, W, Kirk, S. (2015). “Characteristics of Youth Presenting for Weight Management: Retrospective National Data from the POWER Study Group.” Child Obes 11(5): 630-637.