Tailored Diabetes Self-Management Resources
| Status: | Completed |
|---|---|
| Conditions: | Diabetes, Diabetes |
| Therapuetic Areas: | Endocrinology |
| Healthy: | No |
| Age Range: | 8 - 16 |
| Updated: | 11/29/2017 |
| Start Date: | September 2014 |
| End Date: | August 8, 2017 |
Family-Centered Tailoring of Pediatric Diabetes Self-Management Resources
Children with type 1 diabetes face complex self-management regimens which make adherence
challenging and ultimately result in poor blood sugar control. Several common barriers
interfere with diabetes control such as limited knowledge or challenges with staying
motivated. Efficacious strategies exist to improve diabetes self-management including, but
not limited to, diabetes education or family therapy. Patients and families often do not
access these strategies, in part due to healthcare systems-based issues such as
accessibility, provider availability, or insurance coverage.
A family-centered approach has been suggested to tailor diabetes care to provide improved
outcomes for each child. Family-centered care engages the family in the decision-making about
the child's health and well-being. In this study we will take a family-centered approach to
providing diabetes self-management by identifying families' unique self-management barriers
through a 10-minute survey tool called PRISM (Problem Recognition in Illness
Self-Management). Based upon the results of PRISM, we will provide tailored self-management
resources (interventions) to meet the family's needs. We will coordinate group-based delivery
of the resources with routine diabetes clinic visits. These group-based resources will be
delivered in four 75-minute sessions over a year.
The primary goal of this study is to compare the effectiveness of family-centered tailoring
of diabetes self-management resources with the untailored approach of usual care. We
hypothesize that the family-centered model of care with tailored resources will improve the
outcomes of glycemic control and quality of life among children with type 1 diabetes and
their parents.
challenging and ultimately result in poor blood sugar control. Several common barriers
interfere with diabetes control such as limited knowledge or challenges with staying
motivated. Efficacious strategies exist to improve diabetes self-management including, but
not limited to, diabetes education or family therapy. Patients and families often do not
access these strategies, in part due to healthcare systems-based issues such as
accessibility, provider availability, or insurance coverage.
A family-centered approach has been suggested to tailor diabetes care to provide improved
outcomes for each child. Family-centered care engages the family in the decision-making about
the child's health and well-being. In this study we will take a family-centered approach to
providing diabetes self-management by identifying families' unique self-management barriers
through a 10-minute survey tool called PRISM (Problem Recognition in Illness
Self-Management). Based upon the results of PRISM, we will provide tailored self-management
resources (interventions) to meet the family's needs. We will coordinate group-based delivery
of the resources with routine diabetes clinic visits. These group-based resources will be
delivered in four 75-minute sessions over a year.
The primary goal of this study is to compare the effectiveness of family-centered tailoring
of diabetes self-management resources with the untailored approach of usual care. We
hypothesize that the family-centered model of care with tailored resources will improve the
outcomes of glycemic control and quality of life among children with type 1 diabetes and
their parents.
This project's long-term goal is to develop a system-level method to move existing,
efficacious self-management resources into the hands of children with type 1 diabetes and
their families. Over 175,000 US children have type 1 diabetes and face a lifetime of
self-management decisions in an attempt to delay or prevent complications, avoid
hypoglycemia, and maintain quality of life for themselves and their parents. Although
efficacious self-management resources exist, most children with diabetes struggle to manage
their disease. Several barriers to diabetes management exist, including knowledge,
motivation, and family interactions. Because barriers are unique for each child and family,
family-centered approaches are recommended. Currently, no systematic approach exists to
identify and address each family's self-management barriers. Information from PRISM (Problem
Recognition in Illness Self-Management), a 10-minute survey tool, could help families and
clinicians make better decisions to address these barriers, ultimately improving outcomes,
fostering family-centered diabetes care, and optimizing resource use.
This randomized, pragmatic trial will compare outcomes from PRISM-based, family-centered
tailoring of self-management resources (intervention) to outcomes from the untailored
approach of usual care. Our specific aims are to assess the effect of family-centered
tailoring of diabetes self-management resources on outcomes that matter to the children and
parents: glycemic control (A1c and fear of hypoglycemia) and child and parent quality of
life.
Children 8-16 years old with diabetes (150 each in usual care and intervention groups) and
their parents will be enrolled at two large pediatric diabetes clinics. We will 1) use PRISM
to identify families' unique self-management barriers; 2) tailor self-management resources to
identified barriers; and 3) coordinate group-based delivery of the resources with routine
diabetes visits. The group-based resources will be delivered in four 75-minute sessions over
12 months. A1c will be assessed after sessions, along with fear of hypoglycemia and quality
of life for the child and parent. We will compare outcomes with mixed-effects models.
efficacious self-management resources into the hands of children with type 1 diabetes and
their families. Over 175,000 US children have type 1 diabetes and face a lifetime of
self-management decisions in an attempt to delay or prevent complications, avoid
hypoglycemia, and maintain quality of life for themselves and their parents. Although
efficacious self-management resources exist, most children with diabetes struggle to manage
their disease. Several barriers to diabetes management exist, including knowledge,
motivation, and family interactions. Because barriers are unique for each child and family,
family-centered approaches are recommended. Currently, no systematic approach exists to
identify and address each family's self-management barriers. Information from PRISM (Problem
Recognition in Illness Self-Management), a 10-minute survey tool, could help families and
clinicians make better decisions to address these barriers, ultimately improving outcomes,
fostering family-centered diabetes care, and optimizing resource use.
This randomized, pragmatic trial will compare outcomes from PRISM-based, family-centered
tailoring of self-management resources (intervention) to outcomes from the untailored
approach of usual care. Our specific aims are to assess the effect of family-centered
tailoring of diabetes self-management resources on outcomes that matter to the children and
parents: glycemic control (A1c and fear of hypoglycemia) and child and parent quality of
life.
Children 8-16 years old with diabetes (150 each in usual care and intervention groups) and
their parents will be enrolled at two large pediatric diabetes clinics. We will 1) use PRISM
to identify families' unique self-management barriers; 2) tailor self-management resources to
identified barriers; and 3) coordinate group-based delivery of the resources with routine
diabetes visits. The group-based resources will be delivered in four 75-minute sessions over
12 months. A1c will be assessed after sessions, along with fear of hypoglycemia and quality
of life for the child and parent. We will compare outcomes with mixed-effects models.
Inclusion Criteria:
- Children and adolescents with type 1 diabetes and their parents who receive care at
one of two sites in Wisconsin.
- Planning to continue care at clinic for the next 2 years.
- English speaking
- Diagnosed with diabetes for > 12 months
Exclusion Criteria:
- Newly diagnosed with diabetes (< 12 months)
- Not a participant in prior preliminary work for this study
We found this trial at
2
sites
9000 W Wisconsin Ave #270
Milwaukee, Wisconsin 53226
Milwaukee, Wisconsin 53226
(414) 266-2000
Principal Investigator: Rosanna Fiallo-Scharer, MD
Phone: 414-266-7504
Children's Hospital of Wisconsin Nothing matters more than our children. At Children's Hospital of Wisconsin,...
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Madison, Wisconsin 53706
(608) 263-2400
Principal Investigator: Elizabeth D Cox, MD, PhD
Phone: 608-263-1202
University of Wisconsin-Madison In achievement and prestige, the University of Wisconsin-Madison has long been recognized...
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