Hitch Your Wagon to a Star - the Lang Lecture
Many times throughout his life, my father said that to reach your goals you must hitch your wagon to a star. When I thought about my journey, my career, and this hectic life that some of us live, as researchers, teaching, maintaining a clinical practice, and having families, it was clear that it could never have been possible without all the stars that have guided my wagon. I accept this award on behalf of all those who consider practice core to what they do and who they are.
Roadmap for Diabetes
I love the practice of diabetes and endocrinology because of the inherent education that is part of working with families. Diabetes is now the third most common chronic condition in children in the U.S.
Diabetes is very labor-intensive and is really nurse-managed and family managed. My research emanates from questions that come from my practice. In my early years, parents asked me about diabetes management and also were asking some unusual questions: “Are more very young children developing diabetes? Why is my son the only black child I know with diabetes?” I conducted my dissertation on the epidemiology of type 1 diabetes in children in Philadelphia, and that has been my life’s work.
When we think about a roadmap for the health of children with diabetes and endocrine disorders, or a roadmap for the health of populations in general, the crucial first step is epidemiology. We must describe the population in order to determine the etiology of the disease and the effective interventions to prevent or decrease the development of new cases.
Epidemiology also guides the allocation of resources at the local, state, and national levels to direct policy.
I have the privilege of leading the Philadelphia Pediatric Diabetes Registry, part of the World Health Organization’s Diabetes Mondiale project, and the only original registry still active. Twenty years of data show the incidence of type 1 diabetes in children in Philadelphia has significantly increased, particularly in very young children - the first data of its kind in the U.S. This is clinically significant: The highest rate of mortality and morbidity in children with diabetes at diagnosis is in children under age 5. The symptoms can be insidious, and often primary care providers don’t consider the diagnosis of diabetes for very young children.
In addition to diabetes, I have always been interest in linear growth assessment. Growth failure can be the first sign of a serious illness, including celiac disease, hypothyroidism, a brain tumor, renal disease. … One of my mentors said that the differential diagnosis for growth failure is Nelson Textbook of Pediatrics. A leading endocrinologist considered growth the “single most important indicator in the health of a child” but recognized that the heights measured in the average outpatient encounter are “useless” for clinical purposes, let alone research, because children are so frequently mismeasured.
When you think about the cost of healthcare, and all the money spent on invasive and noninvasive procedures, it turns out that a growth chart for a child provides the most important information. It is not only that children are mismeasured, it’s that healthcare providers don’t pay adequate attention to growth. In an intervention through the Pediatric Endocrinology Nursing Society, we increased the accuracy of linear measurement in primary care practices in eight U.S. cities and educated more than 500 U.S. nurses in growth, growth disorders, measuring procedures, and psychosocial issues related to stature.
My most recent area of research is racial disparities in children with endocrine disorders, a crucial aspect in promoting the health of children. Health equity is where we all need to move. The Affordable Care Act is certainly looking at the importance of health equity - investing in prevention and wellness, giving individuals and families more control over their own care.
Data show that black children with diabetes have a mortality rate nine times greater than white children, and have worse outcomes and poorer diabetes control. Focus groups from The Children’s Hospital of Philadelphia demonstrated racial differences in the goals, priorities, and perceptions of parents of children with diabetes. If we are ever going to decrease racial disparities, it will not be by clinicians and researchers sitting around a table, trying to “figure it out.”
We have to listen to the voices of our patients and their parents. In the type 1 Diabetes Exchange – a collaborative study among 38 U.S. pediatric sites with more than 14,000 children – we showed that white children are significantly more likely than black and Hispanic children to be treated with insulin pump therapy. Many hypothesize that disparities are not due to race, but to socioeconomic status. We controlled for income and parental education. Yet among all families where the parents had master’s degrees, white children were more likely to be treated with insulin pumps.
The first step is to identify inequity. Truly, until we describe it, we can’t deal with it. Until we recognize that these disparities exist, until we describe the population from an epidemiologic perspective, we cannot even hope to intervene. And how do we intervene? We have to understand the community. Since 2005, thanks to funding from Penn’s Netter Center for Community Partnerships, my students have taught in West Philadelphia on topics related to obesity, diabetes, and growth, and partnered with Sayre High School to screen children for type 2 diabetes risk factors.
We screened almost 300 children, and a third were at risk for type 2 diabetes. To develop an intervention, I asked families: “What activity is fun and easily accessible, and you can do it at home for free?” We came up with dance. More than 100 community members, ranging in age from 5 to 73, attended our Dance for Health nights. They loved it. The true test of a community intervention is sustainability. At Sayre, the dance nights are still going strong. We will return in the spring to collect more data, with an aim to get more funding to keep this project going. So we will be back! This project brings together my passions in diabetes, clinical practice, research, and children’s health, and makes me grateful once again that I hitched my wagon to such stars throughout my career. When I think about them, I am eternally grateful. To paraphrase Ralph Waldo Emerson: “When you hitch your wagon to a star, your path becomes infinite and the universe is yours.