Out of Pocket Diabetes-Related Medical Expenses for Adolescents and Young Adults With Type 1 Diabetes: The SEARCH for Diabetes in Youth Study

Merjaneh, Lina; Pihoker, Catherine; Divers, Jasmin; Fino, Nora; Klingensmith, Georgeanna J.; Shrestha, Sundar S.; Saydah, Sharon; Mayer‐Davis, Elizabeth J.; Dabelea, Dana; Powell, Jill; Lawrence, Jean M.; Dolan, Lawrence M.; Wright, Davene R.

doi:10.2337/dc19-0577

Cited by 6 publications

(11 citation statements)

References 4 publications

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“…Insulin rationing in patients with T1D is very dangerous as it leads to both acute and chronic complications [19,20]. In USA, it has been shown that one in four adults with T1D and families of adolescents with T1D reduce insulin doses due to cost issues [20][21][22]. Insulin rationing was also reported in a survey from different countries with various incomes.…”

Section: Insulin and Glucose Monitoring Rationing During The Lockdownmentioning

confidence: 92%

Caring for a child with type 1 diabetes during COVID-19 lockdown in a developing country: Challenges and parents’ perspectives on the use of telemedicine

Odeh

Gharaibeh

Daher

et al. 2020

Diabetes Research and Clinical Practice

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Background and Aim: Jordan implemented abrupt and extreme lockdown measures to prevent the spread of COVID-19. This study aims to evaluate the effect of these measures on paediatric patients with type 1 diabetes in terms of acute metabolic complications and shortages in insulin and glucose measuring supplies. It also evaluates the caregivers' perceptions of the use of telemedicine during the lockdown. Methods: This is a questionnaire-based cross-sectional study. It was completed using Google forms and patients/caregivers were asked to consent if they agreed to answer. Results: 235 patients/families participated in the study. The mean age of the patients was 10.8 years ± 3.9 years (N = 229). Twenty-four children (10.2%) needed to visit the emergency department during the lockdown period which lasted for 10 weeks. Of these, eight (3.4%) were hospitalized due to acute metabolic complications. Families (58.3%) faced insulin shortages and 14% had to ration insulin, i.e., decrease the dose, during the lockdown. Glucose monitoring strips were rationed by 43.4% of families leading to more frequent low/ high glucose readings in 75.5% of children of these families. Telemedicine using phones and social media applications was utilized for communication with healthcare professionals and continuing medical care. Most of the participants (85.5%) described it as a smooth and positive experience. Conclusions: The extreme lockdown due to COVID-19 pandemic caused insulin and glucose measuring equipment shortages in children with diabetes in Jordan. However, the use of telemedicine for providing guidance and support was perceived positively by the families.

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Section: Insulin and Glucose Monitoring Rationing During The Lockdownmentioning

confidence: 92%

Caring for a child with type 1 diabetes during COVID-19 lockdown in a developing country: Challenges and parents’ perspectives on the use of telemedicine

Odeh

Gharaibeh

Daher

et al. 2020

Diabetes Research and Clinical Practice

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“…32 Using an insulin pump or continuous glucose monitor was associated with higher OOPE. 32 These technologies often improve outcomes, but the financial cost can be burdensome and make them inaccessible. Lower household income, lower parental educational attainment, and being on public health insurance were associated with lower OOPE, as was seeing a pediatric endocrinologist relative to an adult endocrinologist or family practice provider.…”

Section: Barriers To Quality Pediatric Diabetes Carementioning

confidence: 99%

“…Lower household income, lower parental educational attainment, and being on public health insurance were associated with lower OOPE, as was seeing a pediatric endocrinologist relative to an adult endocrinologist or family practice provider. 32 Disparities in care. Disparities in diabetes care are multifaceted, including access, outcomes, and treatment regimens.…”

Section: Barriers To Quality Pediatric Diabetes Carementioning

confidence: 99%

“…Both direct and indirect healthcare‐related costs can pose significant barriers. Direct costs were examined by asking families of youth with T1D to report out of pocket expenses (OOPEs) for diabetes medicines and supplies; mean cost was $65/month; 60% spent >$50/month; and 40% spent >$100/month 32 . Using an insulin pump or continuous glucose monitor was associated with higher OOPE 32 .…”

Section: Study Findingsmentioning

confidence: 99%

“…Direct costs were examined by asking families of youth with T1D to report out of pocket expenses (OOPEs) for diabetes medicines and supplies; mean cost was $65/month; 60% spent >$50/month; and 40% spent >$100/month 32 . Using an insulin pump or continuous glucose monitor was associated with higher OOPE 32 . These technologies often improve outcomes, but the financial cost can be burdensome and make them inaccessible.…”

Section: Study Findingsmentioning

confidence: 99%

See 2 more Smart Citations

Twenty years of pediatric diabetes surveillance: what do we know and why it matters

Dabelea

Sauder

Jensen

et al. 2021

Annals of the New York Academy of Sciences

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SEARCH for Diabetes in Youth (SEARCH) was initiated in 2000 as a multicenter study to address major gaps in the understanding of childhood diabetes in the United States. An active registry of youth diagnosed with diabetes at age <20 years since 2002 assessed prevalence, annual incidence, and trends by age, race/ethnicity, sex, and diabetes type. An observational cohort nested within the population-based registry was established to assess the natural history and risk factors for acute and chronic diabetes-related complications, as well as the quality of care and quality of life of children and adolescents with diabetes from diagnosis into young adulthood. SEARCH findings have contributed to a better understanding of the complex and heterogeneous nature of youth-onset diabetes. Continued surveillance of the burden and risk of type 1 and type 2 diabetes is important to track and monitor incidence and prevalence within the population. SEARCH reported evidence of early diabetes complications highlighting that continuing the long-term follow-up of youth with diabetes is necessary to further our understanding of its natural history and to develop the most appropriate approaches to primary, secondary, and tertiary prevention of diabetes and its complications. This review summarizes two decades of research and suggests avenues for further work.

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Diabetes Care Barriers, Use, and Health Outcomes in Younger Adults With Type 1 and Type 2 Diabetes

et al. 2023

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ImportanceTreatment challenges exist for younger adults with type 1 (T1D) and type 2 diabetes (T2D). Health care coverage, access to, and use of diabetes care are not well delineated in these high-risk populations.ObjectiveTo compare patterns of health care coverage, access to, and use of diabetes care and determine their associations with glycemia among younger adults with T1D and with T2D.Design, Setting, and ParticipantsThis cohort study analyzed data from a survey that was jointly developed by 2 large, national cohort studies: the SEARCH for Diabetes in Youth (SEARCH) study, an observational study of individuals with youth-onset T1D or T2D, and the Treatment Options for Type 2 Diabetes in Adolescents and Youth (TODAY) study, a randomized clinical trial (2004-2011) followed by an observational study (2012-2020). The interviewer-directed survey was administered during in-person study visits in both studies between 2017 and 2019. Data analyses were performed between May 2021 and October 2022.Main Outcomes and MeasuresSurvey questions addressed health care coverage, usual sources of diabetes care, and frequency of care use. Glycated hemoglobin (HbA1c) levels were assayed in a central laboratory. Patterns of health care factors and HbA1c levels were compared by diabetes type.ResultsThe analysis included 1371 participants (mean [range] age, 25 [18-36] years; 824 females [60.1%]), of whom 661 had T1D and 250 had T2D from the SEARCH study and 460 had T2D from the TODAY study. Participants had a mean (SD) diabetes duration of 11.8 (2.8) years. More participants with T1D than T2D in both the SEARCH and TODAY studies reported health care coverage (94.7%, 81.6%, and 86.7%), access to diabetes care (94.7%, 78.1%, and 73.4%), and use of diabetes care (88.1%, 80.5%, and 73.6%). Not having health care coverage was associated with significantly higher mean (SE) HbA1c levels in participants with T1D in the SEARCH study (no coverage, 10.8% [0.5%]; public, 9.4% [0.2%]; private, 8.7% [0.1%]; P &lt; .001) and participants with T2D from the TODAY study (no coverage, 9.9% [0.3%]; public, 8.7% [0.2%]; private, 8.7% [0.2%]; P = .004). Medicaid expansion vs without expansion was associated with more health care coverage (participants with T1D: 95.8% vs 90.2%; participants with T2D in SEARCH: 86.1% vs 73.9%; participants with T2D in TODAY: 93.6% vs 74.2%) and lower HbA1c levels (participants with T1D: 9.2% vs 9.7%; participants with T2D in SEARCH: 8.4% vs 9.3%; participants with T2D in TODAY: 8.7% vs 9.3%). The T1D group incurred higher median (IQR) monthly out-of-pocket expenses than the T2D group ($74.50 [$10.00-$309.00] vs $10.00 [$0-$74.50]).Conclusions and RelevanceResults of this study suggested that lack of health care coverage and of an established source of diabetes care were associated with significantly higher HbA1c levels for participants with T1D, but inconsistent results were found for participants with T2D. Increased access to diabetes care (eg, through Medicaid expansion) may be associated with improved health outcomes, but additional strategies are needed, particularly for individuals with T2D.

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Out of Pocket Diabetes-Related Medical Expenses for Adolescents and Young Adults With Type 1 Diabetes: The SEARCH for Diabetes in Youth Study

Cited by 6 publications

References 4 publications

Caring for a child with type 1 diabetes during COVID-19 lockdown in a developing country: Challenges and parents’ perspectives on the use of telemedicine

Caring for a child with type 1 diabetes during COVID-19 lockdown in a developing country: Challenges and parents’ perspectives on the use of telemedicine

Twenty years of pediatric diabetes surveillance: what do we know and why it matters

Diabetes Care Barriers, Use, and Health Outcomes in Younger Adults With Type 1 and Type 2 Diabetes

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