It is easy to take your pancreas for granted. When you eat, your pancreas makes insulin, a hormone necessary for your cells to use sugar from food. For 175,000 children with type 1 diabetes (15,000 newly diagnosed annually), the pancreas does not make insulin, so sugar accumulates in the blood. Unlike type 2 diabetes, type 1 diabetes cannot be prevented, cured, or treated solely with better diet and exercise. The only way for these children to survive is with multiple daily insulin injections. Not taking enough insulin can cause serious health problems, like kidney failure and blindness. Taking too much insulin can cause seizures or even death.
Managing diabetes can reduce child and parent quality of life (QOL), negatively affecting school/work attendance and participation in activities. Diabetes care is also costly, approximately $14.9 billion annually in the United States. Although help is available, most families struggle to control their child’s diabetes. Each family faces a different set of challenges in managing the disease. Taking a family-centered approach to diabetes management, in which resources are tailored to each family’s unique challenges, could result in better health.
Currently, there is no convenient way for providers to identify families’ challenges in managing diabetes, so families are often referred to resources that do not address their needs. Families become frustrated and may not get the services needed to successfully manage diabetes.
PRISM (Problem Recognition in Illness Self-Management), a 10-minute survey, can identify the best resources to help families, based on their specific needs. In preliminary testing, using PRISM to select resources resulted in substantial improvements in blood sugar control. This project’s long-term goal is to provide families with the best help for managing diabetes, to improve blood sugar control and QOL.
In partnership with parents, children, clinicians, clinic administrators, and the Juvenile Diabetes Research Foundation, this study will examine whether families who use PRISM to select resources to improve diabetes management will have better blood sugar control and child/parent QOL than families receiving usual care. About 200 children (8 to 16 years old) with diabetes and their parent(s) will be enrolled at two sites. Families who agree to participate will complete the PRISM and QOL surveys and have their child’s A1c (blood sugar control) measured. Families will be randomly assigned to receive either resources that are matched to their needs by PRISM or their usual care (100 in each category). Resources will be delivered in group sessions scheduled to coincide with children’s routine diabetes visits, making participation easier for families. Children’s blood sugar control will be measured every three to six months while child/parent QOL will be measured every six months. If PRISM improves blood sugar or QOL, the tool could be incorporated into the care of all children with diabetes.
Fiallo-Scharer R, Palta M, Chewning BA, et al., Design and baseline data from a PCORI-funded randomized controlled trial of family-centered tailoring of diabetes self-management resources, Contemporary Clinical Trials (April 2017).
Ye CY, Jeppson TC, Kleinmaus EM, et al., Outcomes That Matter to Teens With Type 1 Diabetes, The Diabetes Educator (March 2017).
VIDEO: Helping Families Manage Type 1 Diabetes in Adolescents
Elizabeth Cox talks about what prompted her to pursue research that's long-term goal is to provide families with the best help for managing diabetes.
Chung JS, Young HN, Moreno MA, et al., Patient-centred outcomes research: brave new world meets old institutional policies, Family Practice (January 2017).