Objective
The overall goal of this proposal to identify the drivers disparities in CGM ad AID uptake for minoritized young children and their families and with that knowledge develop, test, and refine a brief intervention for families and clinicians to increase uptake of CGM and AID for minoritized children living with T1D. With support from graphic designers and web content developers, this intervention can be packaged as a resource for families and clinicians for JDRF to make available to all, thereby improving the lives of all children with T1D.
The overall research objective of this proposal is three-fold:
1. To develop a robust evidence base of barriers and promoters of diabetes technology use in children with T1D informed by children, their parents/guardians, and their providers
2. To design brief pilot interventions directed at families and providers with the goal of increasing diabetes technology uptake for children with T1D and public insurance
3. To determine feasibility, acceptability, and preliminary efficacy of the pilot interventions.
This proposal is designed as a psychosocial assessment and intervention for children with T1D and public insurance, their parents/ guardians, and their providers. By addressing the psychosocial factors that impact CGM and AID use (as experienced by children and their families) and recommendations (as experienced by pediatric diabetes providers), we aim to impact CGM and AID uptake in minoritized children with T1D. The long-term positive implications of increasing CGM and AID use for minoritized children include improving metabolic control, through increase of continuous glucose monitoring, conventional insulin pump, and hybrid closed loop pumps. Increasing diabetes technology uptake now will also pave the way for equitable delivery of the next wave of innovative technology, such as artificial pancreas technology.
Background Rationale
In the last decade, studies have demonstrated that diabetes technology, such as insulin pumps and continuous glucose monitoring (CGM), improve glycemic outcomes in children with T1D. This improvement in glucose control decreases both short- and long-term complications, which have a substantial toll on children, their family, and the healthcare system. Independent of these improvements, the use of diabetes technology is associated with improved quality of life measures and psychosocial states. Recent studies have demonstrated an improvement in hemoglobin A1c (HbA1c), a 3-month average of blood glucose values, in those who use CGM irrespective of mode of insulin delivery (insulin pump or multiple daily injections). For these reasons, CGM is now a cornerstone of T1D management as indicated by national and international diabetes management guidelines. Additionally, use of and comfort with diabetes technology is the first step in the adoption of hybrid close loop insulin delivery systems, the cutting-edge technology now available to optimize T1D management. Use of diabetes technology now also increases the likelihood of adoption of the next wave of life-changing diabetes technology advances, such as artificial pancreas.
However, a clear pattern has emerged: children from low socioeconomic and minoritized racial/ethnic groups are being left behind in the adoption of diabetes technology. Children from these minoritized groups are consistently using less diabetes technology than their non-minoritized peers and consistently have higher HbA1c. In addition to the need to bridge disparities in diabetes technology use and HbA1c now, there are long term implications to leaving minoritized children behind in diabetes technology adoption. If we do not
address the adoption of CGM and standard insulin pumps in these children, they will also be less likely to adopt the current and next wave of innovative, effective, and life-changing diabetes technology, such as hybrid closed loop pumps and artificial pancreas.
The reasons that contribute to unequal access appear to be multi-factorial including system level factors (such as insurance status), diabetes provider factors (such as provider implicit bias), family factors (such as parental language), and child factors (such as trust in the medical system), to name a few. Critical to addressing this disparity is identifying which of these potential reasons is most potent and most likely to result in changes in uptake and recommendations. This proposal aims to do just that. Built and designed from the vantage point of children, their parents/guardians, and their providers, we will systematically evaluate the multi-factorial reasons that limit diabetes technology uptake in children with public insurance and identify key factors that we can intervene on to increase uptake (on the part of the families) and recommendation (on the part of the provider). By identifying which factors are most important, we aim to design an intervention informed by key stakeholders in order to understand and address barriers to diabetes technology. This proposal will address both of these deficits in the literature while accounting for the added layer unique to pediatrics, the family.
Advances in diabetes technology have revolutionized diabetes management in children with type 1 diabetes (T1D). Although diabetes technology has the ability to decrease inequities in pediatric T1D outcomes, differential access and utilization of diabetes technology has resulted in the worsening of pediatric diabetes outcomes. To date, studies have not systematically evaluated the potential drivers in pediatric diabetes disparities and none have considered the perspectives of children, their families and their providers. Thus, we need studies aimed at understanding and ameliorating the persistent worsening of disparities of diabetes technology use in publicly insured children with T1D.
Description of Project
In the last decade, diabetes technology, including continuous glucose monitoring, insulin pumps, and hybrid closed loop pumps, have truly revolutionized T1D management. Diabetes technology use is associated with improvements in diabetes outcomes and quality of life measures in children with T1D. However, children from low socioeconomic status (SES) and minoritized racial/ethnic groups are half as likely to use diabetes technology and have higher hemoglobin A1c as compared to their high SES peers. Although diabetes technology has the potential to reduce disparities in pediatric T1D outcomes, inequitable access has resulted in worsening of T1D outcomes for low SES children. Thus, leveraging diabetes technology as a method to bridge, rather than worsen, disparities in diabetes outcomes is a promising means of reducing disparities. This proposal aims to build an evidence base for data-driven interventions designed to reduce disparities in diabetes innovations by addressing barriers and supporting promoters of diabetes technology use.
Preliminary data has identified a unique relationship between ethnicity and language preference where these intersectional identities strongly influence diabetes technology utilizations. Additionally, minoritized families reported a difference in the perceptions of CGM versus insulin pumps – stating that CGM are a “necessity,” but pumps are not. These perceptions appear to be driven by clinician recommendations, insurance barriers, and trust. These data underscore the need for further investigation, at the national level, of the SDOH that drive health disparities in pediatric T1D. This proposal does just that: expand local learnings to a national study to assess the drivers and solutions of health disparities in children with T1D, thereby increasing diabetes technology access for all children. We have started recruitment for a complementary NIH proposal addressing barriers to technology uptake in youth and young adults aged 12-21 years. This recruitment effort has been successful with over 25 families contacted and a >90% survey completion rate. This JDRF proposal will leverage existing infrastructure and collaborations from the K23 to recruit minoritized children and their families. Protocol changes to recruitment are already underway and eligible participants are pended for approach if funded.
Anticipated Outcome
The multiple anticipated outcomes from this research proposal will result in the building of a systematic evidence base that understands and addresses the knowledge gaps in the drivers of T1D disparities in children with public insurance.
Anticipated outcomes are outlined by the aims and phases of the study:
Aim 1, Phase 1: The outcomes of this portion of the study include:
1. Children and family survey measure findings that span the domains of social determinants of health, experience of discrimination, technology readiness, and psychosocial factors,
2. Focus groups data from children and their family that summarize system factors, interpersonal relations, and individual drivers of inequities in pediatric T1D care, and
3. Development of a brief intervention module that is co-developed with children and their families
We anticipate that children with public insurance from minoritized racial/ethnic groups will endorse discrimination more frequently than non-minoritized children.
Irrespective of race/ethnicity, we expect that children with public insurance and their families will endorse readiness and acceptance of diabetes technology. Additionally, barriers to diabetes technology uptake that are not captured by survey measures will be explored in the focus groups. We anticipate the barriers identified by focus groups will include previously stated barriers (e.g., on-body experience) and children with public insurance will endorse more provider, insurance, and systems-level barriers to diabetes technology uptake.
Identifying the factors most associated with technology use will have informed the intervention design which will be piloted in Phase 2.
Aim 1, Phase 2 will test the intervention for families of children with T1D and public insurance. From this phase, we hope to assess feasibility (how likely is it that families will participate in this intervention) and acceptability (do families find this intervention useful). We will also look to see if there is any impact on diabetes technology uptake after families receive the intervention.
Aim 2, Phase 1: The outcomes of this portion of the study include:
1. provider survey measure findings that span the domains of work life, patient-provider relationship, technology attitudes, and internal state,
2. focus groups from providers that summarize system factors, interpersonal relations, and individual drivers of inequities in pediatric T1D care, and
3. development of a brief intervention module for diabetes providers
We anticipate that providers will endorse significant barriers and hesitancy to recommend diabetes technology to children with public insurance. Additionally, we expect that providers will readily and heavily cite insurance barriers to recommending diabetes technology and will not have an appreciable understanding of structural drivers of disparities in diabetes technology use (e.g., medical racism, lack of trust in health care systems, etc.). We anticipate barriers to diabetes technology recommendations that are not captured by survey measures will be elucidated in the focus groups. Identifying factors that most influence provider diabetes technology recommendations will inform the intervention design which will be pilot tested in Phase 2.
Aim 2, Phase 2 will test the intervention developed in Phase 1 on pediatric diabetes providers. We will assess feasibility (how likely is it that providers will participate in this intervention) and acceptability (do providers find this intervention useful). We will also look to see if there is any impact on diabetes technology recommendation after
receiving the intervention.
Relevance to T1D
This proposed research is highly relevant to type 1 diabetes (T1D) as it aims to understand and address barriers to diabetes technology use in children with T1D and public insurance.
T1D is a common disease affecting one in 300 children in the US. Recent population level data have demonstrated that more children are being diagnosed with T1D and this is being driven, in part, by an increase in T1D rates for children from diverse racial/ethnic backgrounds. An additional consideration of T1D management in the US is the cost of health care which can place an economically sound family at financial risk due to both routine and unexpected care costs. For families that are already financially vulnerable, T1D management options are often limited. In the United States, cost and insurance coverage are major considerations in the choice of T1D management.
The latest national and international guidelines by the American Diabetes Association and the International Society for Pediatric and Adolescent Diabetes recommends a hemoglobin A1c (HbA1c) goal of <7%. This goal challenges even the most informed, motivated, and socioeconomically privileged family and data demonstrate that this goal is less likely to be reached for children in the US who come from minoritized groups. The HbA1c goal is set to minimize complications associated with T1D as improvements in blood glucose values are associated with improvements in short- and long- term complications. It is clear that diabetes technology use supports children in meeting these HbA1c goals.
Continuous glucose monitoring, insulin pumps, and automated insulin delivery systems have transformed T1D management for children and are associated with improvements in blood glucose values as well as psychosocial benefits. These benefits associated with diabetes technology are currently preferentially experienced by children from higher socioeconomic groups and of non-minoritized racial/ethnic groups as they have higher diabetes technology use. These disparities in diabetes technology use and HbA1c have only recently been recognized. Very little is understood on why these disparities exist and studies have not been designed with direct input from the minoritized group and their stakeholders who have the most insight on drivers of disparities.
Thus, considering the increasing diversity of pediatric T1D, the cost of having T1D in the US, the HbA1c goals inconsistently met by minoritized children, and the worsening disparities in diabetes technology use, this proposal is relevant to a broad group of children with T1D and their families. Grounded in the experiences of children with public insurance, their
parents/guardians, and their providers, this proposed study is at the forefront of T1D disparities and offers a robust and systematic evidence base that can identify barriers and promoters to diabetes technology, thereby addressing disparities in pediatric T1D.