Assessing the Revised Safer Dx Instrument® in the understanding of ambulatory system design changes for type 1 diabetes and autism spectrum disorder in pediatrics.

OBJECTIVES: We sought within an ambulatory safety study to understand if the Revised Safer Dx instrument may be helpful in identification of diagnostic missed opportunities in care of children with type 1 diabetes (T1D) and autism spectrum disorder (ASD). METHODS: We reviewed two months of emergency department (ED) encounters for all patients at our tertiary care site with T1D and a sample of such encounters for patients with ASD over a 15-month period, and their pre-visit communication methods to better understand opportunities to improve diagnosis. We applied the Revised Safer Dx instrument to each diagnostic journey. We chose potentially preventable ED visits for hyperglycemia, diabetic ketoacidosis, and behavioral crises, and reviewed electronic health record data over the prior three months related to the illness that resulted in the ED visit. RESULTS: We identified 63 T1D and 27 ASD ED visits. Using the Revised Safer Dx instrument, we did not identify any potentially missed opportunities to improve diagnosis in T1D. We found two potential missed opportunities (Safer Dx overall score of 5) in ASD, related to potential for ambulatory medical management to be improved. Over this period, 40 % of T1D and 52 % of ASD patients used communication prior to the ED visit. CONCLUSIONS: Using the Revised Safer Dx instrument, we uncommonly identified missed opportunities to improve diagnosis in patients who presented to the ED with potentially preventable complications of their chronic diseases. Future researchers should consider prospectively collected data as well as development or adaptation of tools like the Safer Dx.

Online Educational Resources for Youth Living With Type 1 Diabetes Transitioning to Adult Care: An Environmental Scan of Canadian Content.

OBJECTIVES: There are many educational resources for adolescents and young adults living with type 1 diabetes; however, it is unknown whether they address the breadth of topics related to transition to adult care. Our aim in this study was to collect educational resources relevant to Canadian youth and assess their quality and comprehensiveness in addressing the knowledge necessary for youth to prepare for interdependent management of their diabetes. METHODS: We conducted an environmental scan, a systematic assessment and analysis, of online education resources in English and French relevant to Canadian youth living with type 1 diabetes. Resources were screened using an open education resource evaluation grid and relevant resources were mapped to the Readiness for Emerging Adults with Diabetes Diagnosed in Youth, a validated diabetes transition readiness assessment tool. RESULTS: From 44 different sources, 1,245 resources were identified and, of these, 760 were retained for analysis. The majority were webpages (50.1%) and downloadable PDFs (42.4%), and 12.1% were interactive. Most resources covered Diabetes Knowledge (46.0%), Health Behaviour (23.8%), Insulin and Insulin Pump Management (11.8% and 8.6%, respectively), and Health-care System Navigation (9.7%). Topic areas with the fewest resources were disability accommodations (n=5), sexual health/function (n=4), and locating trustworthy diabetes resources (n=3). CONCLUSIONS: There are many resources available for those living with type 1 diabetes preparing to transition to adult care, with the majority pertaining to diabetes knowledge and the least for navigation of the health system. Few resources were available on the topics of substance use, sexual health, and reproductive health. An interactive presentation of these resources, as well as a central repository to house these resources, would improve access for youth and diabetes care providers during transition preparation.

Incorporating the Six Core Elements of Health Care Transition in Type 1 Diabetes Care for Emerging Adults.

A growing body of literature finds persistent problems in the provision of recommended health care transition services, as well as adverse outcomes associated with the lack of these services in emerging adults with type 1 diabetes. The Six Core Elements of Health Care Transition offers a structured approach to the phases of health care transition support for both pediatric and adult diabetes practices. This article reviews strategies to incorporate the Six Core Elements into ambulatory diabetes care to support successful health care transition for emerging adults with type 1 diabetes.

Young Adults with Type 1 Diabetes.

Young adults experience multiple developmental transitions across social, educational, vocational, residential, and financial life domains. These transitions are potential competing priorities to managing a chronic condition such as type 1 diabetes and can contribute to poor psychosocial and medical outcomes. In this narrative review, we describe population outcomes of young adult populations and the unique considerations associated with managing type 1 diabetes in young adulthood. We provide an overview of the current evidence-based strategies to improve care for young adults with type 1 diabetes and recommendations for future directions in the field.

Patient Demographics and Clinical Outcomes Among Type 1 Diabetes Patients Using Continuous Glucose Monitors: Data From T1D Exchange Real-World Observational Study.

BACKGROUND: The benefits of Continuous Glucose Monitoring (CGM) on glycemic management have been demonstrated in numerous studies; however, widespread uptake remians limited. The aim of this study was to provide real-world evidence of patient attributes and clinical outcomes associated with CGM use across clinics in the U.S. based T1D Exchange Quality Improvement (T1DX-QI) Collaborative. METHOD: We examined electronic Health Record data from eight endocrinology clinics participating in the T1DX-QI Collaborative during the years 2017-2019. RESULTS: Among 11,469 type 1 diabetes patients, 48% were CGM users. CGM use varied by race/ethnicity with Non-Hispanic Whites having higher rates of CGM use (50%) compared to Non-Hispanic Blacks (18%) or Hispanics (38%). Patients with private insurance were more likely to use CGM (57.2%) than those with public insurance (33.3%) including Medicaid or Medicare. CGM users had lower median HbA1c (7.7%) compared to nonusers (8.4%). Rates of diabetic ketoacidosis (DKA) and severe hypoglycemia were significantly higher in nonusers compared to CGM users. CONCLUSION: In this real-world study of patients in the T1DX-QI Collaborative, CGM users had better glycemic control and lower rates of DKA and severe hypoglycemia (SH) events, compared to nonusers; however, there were significant sociodemographic disparities in CGM use. Quality improvement and advocacy measures to promote widespread and equitable CGM uptake have the potential to improve clinical outcomes.

Long-term Continuous Glucose Monitor Use in Very Young Children With Type 1 Diabetes: One-Year Results From the SENCE Study.

OBJECTIVES: Achieving optimal glycemic outcomes in young children with type 1 diabetes (T1D) is challenging. This study examined the durability of continuous glucose monitoring (CGM) coupled with a family behavioral intervention (FBI) to improve glycemia. STUDY DESIGN: This one-year study included an initial 26-week randomized controlled trial of CGM with FBI (CGM+FBI) and CGM alone (Standard-CGM) compared with blood glucose monitoring (BGM), followed by a 26-week extension phase wherein the BGM Group received the CGM+FBI (BGM-Crossover) and both original CGM groups continued this technology. RESULTS: Time in range (70-180 mg/dL) did not improve with CGM use (CGM+FBI: baseline 37%, 52 weeks 41%; Standard-CGM: baseline 41%, 52 weeks 44%; BGM-Crossover: 26 weeks 38%, 52 weeks 40%). All three groups sustained decreases in hypoglycemia (<70 mg/dL) with CGM use (CGM+FBI: baseline 3.4%, 52 weeks 2.0%; Standard-CGM: baseline 4.1%, 52 weeks 2.1%; BGM-Crossover: 26 weeks 4.5%, 52 weeks 1.7%, P-values <.001). Hemoglobin A1c was unchanged with CGM use (CGM+FBI: baseline 8.3%, 52 weeks 8.2%; Standard-CGM: baseline 8.2%, 52 weeks 8.0%; BGM-Crossover: 26 weeks 8.1%, 52 weeks 8.3%). Sensor use remained high (52-week study visit: CGM+FBI 91%, Standard-CGM 92%, BGM-Crossover 88%). CONCLUSION: Over 12 months young children with T1D using newer CGM technology sustained reductions in hypoglycemia and, in contrast to prior studies, persistently wore CGM. However, pervasive hyperglycemia remained unmitigated. This indicates an urgent need for further advances in diabetes technology, behavioral support, and diabetes management educational approaches to optimize glycemia in young children.

Safer Type 1 Diabetes Care at Home: SEIPS-based Process Mapping with Parents and Clinicians.

Introduction: The limited data indicate that pediatric medical errors in the outpatient setting, including at home, are common. This study is the first step of our Ambulatory Pediatric Patient Safety Learning Lab to address medication errors and treatment delays among children with T1D in the outpatient setting. We aimed to identify failures and potential solutions associated with medication errors and treatment delays among outpatient children with T1D. Methods: A transdisciplinary team of parents, safety researchers, and clinicians used Systems Engineering Initiative for Patient Safety (SEIPS) based process mapping of data we collected through in-home medication review, observation of administration, chart reviews, parent surveys, and failure modes and effects analysis (FMEA). Results: Eight (57%) of the 14 children who had home visits experienced 18 errors (31 per 100 medications). Four errors in two children resulted in harm, and 13 had the potential for harm. Two injuries occurred when parents failed to treat severe hypoglycemia and lethargy, and two were due to repeated failures to administer insulin at home properly. In SEIPS-based process maps, high-risk errors occurred during communication between the clinic and home or in management at home. Two FMEAs identified interventions to better communicate with families and support home care, especially during evolving illness. Conclusion: Using SEIPS-based process maps informed by multimodal methods to identify medication errors and treatment delays, we found errors were common. Better support for managing acute illness at home and improved communication between the clinic and home are potentially high-yield interventions.

Learning experience design of an mHealth self-management intervention for adolescents with type 1 diabetes.

Type 1 diabetes (T1D) is a lifelong and chronic condition that can cause severely compromised health. The T1D treatment regimen is complex, and is a particular challenge for adolescents, who frequently experience a number of treatment adherence barriers (e.g., forgetfulness, planning and organizational challenges, stress). Diabetes Journey is a gamified mHealth program designed to improve T1D self-management through a specific focus on decreasing adherence barriers and improving executive functioning skills for adolescents. Grounded in situativity theory and guided by a sociotechnical-pedagogical usability framework, Diabetes Journey was designed, developed, and evaluated using a learning experience design approach. This approach applied design thinking methods within a Successive Approximation Model design process. Iterative design and formative evaluation were conducted across three design phases, and improvements were implemented following each phase. Findings from the user testing phase indicate Diabetes Journey is a user-friendly mHealth program with high usability that holds promise for enhancing adolescents' T1D self-management. Implications for future designers and researchers are discussed regarding the social dimension of the sociotechnical-pedagogical usability framework. An extension to the framework is proposed to extend the social dimension to include socio-cultural and contextual considerations when designing mHealth applications. Consideration of the pedagogical and sociocultural dimensions of learning is imperative when developing psychoeducational interventions.

Changes in Bone Marrow Adipose Tissue in Transgender and Gender Non-Conforming Youth Undergoing Pubertal Suppression: A Pilot Study.

Pubertal suppression with gonadotropin-releasing hormone (GnRH) agonists in transgender and gender non-conforming (TGNC) youth may affect acquisition of peak bone mass. Bone marrow adipose tissue (BMAT) has an inverse relationship with bone mineral density (BMD). To evaluate the effect of pubertal suppression on BMAT, in this pilot study we prospectively studied TGNC youth undergoing pubertal suppression and cisgender control participants with similar pubertal status over a 12-month period. BMD was measured by dual-energy X-ray absorptiometry and peripheral quantitative computed tomography. Magnetic Resonance T1 relaxometry (T1-R) and spectroscopy (MRS) were performed to quantify BMAT at the distal femur. We compared the change in BMD, T1-R values, and MRS lipid indices between the two groups. Six TGNC (two assigned female and four assigned male at birth) and three female control participants (mean age 10.9 and 11.7 years, respectively) were enrolled. The mean lumbar spine BMD Z-score declined by 0.29 in the TGNC group, but increased by 0.48 in controls (between-group difference 0.77, 95% CI: 0.05, 1.45). Similar findings were observed with the change in trabecular volumetric BMD at the 3% tibia site (-4.1% in TGNC, +3.2% in controls, between-group difference 7.3%, 95% CI: 0.5%-14%). Distal femur T1 values declined (indicative of increased BMAT) by 7.9% in the TGNC group, but increased by 2.1% in controls (between-group difference 10%, 95% CI: -12.7%, 32.6%). Marrow lipid fraction by MRS increased by 8.4% in the TGNC group, but declined by 0.1% in controls (between-group difference 8.5%, 95% CI: -50.2%, 33.0%). In conclusion, we observed lower bone mass acquisition and greater increases in BMAT indices by MRI and MRS in TGNC youth after 12 months of GnRH agonists compared with control participants. Early changes in BMAT may underlie an alteration in bone mass acquisition with pubertal suppression, including alterations in mesenchymal stem cells within marrow.

Trends in Type 1 Diabetic Ketoacidosis During COVID-19 Surges at 7 US Centers: Highest Burden on non-Hispanic Black Patients.

CONTEXT: The impact of the COVID-19 pandemic on individuals with type 1 diabetes remains poorly defined. OBJECTIVE: We examined United States trends in diabetic ketoacidosis (DKA) among individuals with type 1 diabetes (T1D) during the COVID-19 pandemic at 7 large US medical centers and factors associated with these trends. METHODS: We compared DKA events among children and adults with T1D during COVID-19 surge 1 (March-May 2020) and COVID-19 surge 2 (August-October 2020) to the same periods in 2019. Analysis was performed using descriptive statistics and chi-square tests. RESULTS: We found no difference in the absolute number of T1D patients experiencing DKA in 2019 vs 2020. However, a higher proportion of non-Hispanic Black (NHB) individuals experienced DKA in 2019 than non-Hispanic White (NHW) individuals (44.6% vs 16.0%; P < .001), and this disparity persisted during the COVID-19 pandemic (48.6% vs 18.6%; P < .001). DKA was less common among patients on continuous glucose monitor (CGM) or insulin pump in 2020 compared to 2019 (CGM: 13.2% vs 15.0%, P < .001; insulin pump: 8.0% vs 10.6%, P < .001). In contrast to annual DKA totals, a higher proportion of patients had DKA during COVID-19 surges 1 and 2 compared to the same months in 2019 (surge 1: 7.1% vs 5.4%, P < .001; surge 2: 6.6% vs 5.7%, P = .001). CONCLUSION: DKA frequency increased among T1D patients during COVID-19 surges with highest frequency among NHB patients. DKA was less common among patients using CGM or insulin pumps. These findings highlight the urgent need for improved strategies to prevent DKA among patients with T1D-not only under pandemic conditions, but under all conditions-especially among populations most affected by health inequities.

Opportunities for Enhanced Transition of Care Preparation for Adolescents and Emerging Adults With Type 1 Diabetes: Use of the READDY Transition Tool.

There is an ongoing need to determine best practices for effective transition from pediatric to adult care for adolescents and emerging adults (EAs) with type 1 diabetes given the potential for poor health outcomes post-transfer. This study evaluated self-reported confidence ratings as measured by the Readiness of Emerging Adults with Diabetes Diagnosed in Youth (READDY) tool among adolescents and EAs with type 1 diabetes and the association of the confidence ratings with clinical and demographic characteristics, as well as provider documentation of relevant anticipatory guidance topics. The READDY is a diabetes-specific tool used to collect patient-reported confidence in transition preparation topics to target educational interventions. These interventions are divided into four domains: Diabetes Knowledge, Health System Navigation, Insulin Self-Management, and Health Behaviors. A retrospective chart review was conducted of patients 15-24 years of age with type 1 diabetes who completed the READDY survey between January 2017 and January 2018 at a single center. Overall patient-reported confidence levels were high. However, adolescents and EAs endorsed their lowest levels of confidence on items assessing knowledge of alcohol, tobacco, sexual health, and the impact of diabetes on pregnancy (females only), with the percentages of low scores of 20.7, 25.9, 35.9, and 42.9%, respectively. Documentation of provider counseling about screening and prevention of diabetes comorbidities, alcohol use, and tobacco use was associated with scores in the higher range for the corresponding item in the READDY survey. These findings highlight an opportunity to create interventions related to developmentally important topics for adolescents and EAs with type 1 diabetes to enhance successful transition preparation.

Testing an Automated Approach to Identify Variation in Outcomes among Children with Type 1 Diabetes across Multiple Sites.

Introduction: Efficient methods to obtain and benchmark national data are needed to improve comparative quality assessment for children with type 1 diabetes (T1D). PCORnet is a network of clinical data research networks whose infrastructure includes standardization to a Common Data Model (CDM) incorporating electronic health record (EHR)-derived data across multiple clinical institutions. The study aimed to determine the feasibility of the automated use of EHR data to assess comparative quality for T1D. Methods: In two PCORnet networks, PEDSnet and OneFlorida, the study assessed measures of glycemic control, diabetic ketoacidosis admissions, and clinic visits in 2016-2018 among youth 0-20 years of age. The study team developed measure EHR-based specifications, identified institution-specific rates using data stored in the CDM, and assessed agreement with manual chart review. Results: Among 9,740 youth with T1D across 12 institutions, one quarter (26%) had two or more measures of A1c greater than 9% annually (min 5%, max 47%). The median A1c was 8.5% (min site 7.9, max site 10.2). Overall, 4% were hospitalized for diabetic ketoacidosis (min 2%, max 8%). The predictive value of the PCORnet CDM was >75% for all measures and >90% for three measures. Conclusions: Using EHR-derived data to assess comparative quality for T1D is a valid, efficient, and reliable data collection tool for measuring T1D care and outcomes. Wide variations across institutions were observed, and even the best-performing institutions often failed to achieve the American Diabetes Association HbA1C goals (<7.5%).

Feasibility of Electronic Health Record Assessment of 6 Pediatric Type 1 Diabetes Self-management Habits and Their Association With Glycemic Outcomes.

Importance: A low-burden electronic health record (EHR) workflow has been devised to systematize the collection and validation of 6 key diabetes self-management habits: (1) checks glucose at least 4 times/day or uses continuous glucose monitor (CGM); (2) gives at least 3 rapid-acting insulin boluses per day; (3) uses insulin pump; (4) delivers boluses before meals; (5) reviewed glucose data since last clinic visit, and (6) has changed insulin doses since the last clinic visit. Objective: To describe the performance of these habits and examine their association with hemoglobin A1c (HbA1c) levels and time in range (TIR). Design, Setting, and Participants: This cross-sectional study included individuals with known type 1 diabetes who were seen in a US pediatric diabetes clinic in 2019. Main Outcomes and Measures: Habit performance, total habit score (sum of 6 habits per person), HbA1c levels, and TIR. Results: Of 1344 patients, 1212 (609 [50.2%] males; 66 [5.4%] non-Hispanic Black; 1030 [85.0%] non-Hispanic White; mean [SD] age, 15.5 [4.5] years) were included, of whom 654 (54.0%) were using CGM and had a TIR. Only 105 patients (8.7%) performed all 6 habits. Habit performance was lower among older vs younger patients (age ≥18 years vs ≤12 years: 17 of 411 [4.1%] vs 57 of 330 [17.3%]; P < .001), Black vs White patients (3 [4.5%] vs 95 [9.2%]; P < .001), those with public vs private insurance (14 of 271 [5.2%] vs 91 of 941 [9.7%]; P < .001), and those with lower vs higher parental education levels (

Quality Improvement in Diabetes Care: A Review of Initiatives and Outcomes in the T1D Exchange Quality Improvement Collaborative.

Despite immense strides in therapeutic advances, clinical outcomes continue to be less than ideal for people with type 1 diabetes. This discrepancy has prompted an outpouring of quality improvement (QI) initiatives to address the medical, psychosocial, and health equity challenges that complicate ideal type 1 diabetes care and outcomes. This article reviews a framework for QI in diabetes care that guided the development of the T1D Exchange Quality Improvement Collaborative to improve care delivery and health outcomes in type 1 diabetes. Evaluation of the methodology, outcomes, and knowledge gained from these initiatives will highlight the importance of continued QI initiatives in diabetes care.

Socioeconomic and Racial Disparities in Diabetic Ketoacidosis Admissions in Youth With Type 1 Diabetes.

OBJECTIVE: We sought to determine whether census tract poverty, race, and insurance status were associated with the likelihood and severity of diabetic ketoacidosis (DKA) hospitalization among youth with type 1 diabetes (T1D). METHODS: We conducted a retrospective population-based cohort study using Cincinnati Children's Hospital electronic medical record (EMR) data from January 1, 2011, to December 31, 2017, for T1D patients ≤18 years old. The primary outcome was admission for DKA. Secondary outcomes included DKA severity, defined by initial pH and bicarbonate, and length of stay. Exposures were the poverty rate for the youth's home census tract, parent-reported race, and insurance status. We used multivariable logistic regression to analyze effects on odds of admission. RESULTS: We identified 439 patients with T1D; 152 were hospitalized. The cohort was 48% female, 25% Black, and 36% publicly insured; the median age was 14 years. For every 10% increase in a youth's census tract poverty rate, the adjusted odds of admission increased by 22% (95% CI, 1.03-1.47). Public insurance status was associated with DKA admission (adjusted odds ratio [AOR], 2.71, 95% CI, 1.62-4.55) while race was not. There were no clinically meaningful differences in pH or bicarbonate by census tract poverty, race, or insurance status; however, Black patients experienced differences in care (eg, longer length of stay). CONCLUSION: Youth with T1D living in high poverty areas and on public insurance were significantly more likely to be admitted for DKA. Severity upon presentation was similar across exposures. Understanding contextual mechanisms by which disparities emerge will inform changes aimed at equitably improving care.

Adoption of Telemedicine for Type 1 Diabetes Care During the COVID-19 Pandemic.

Background: We describe the utilization of telemedicine visits (video or telephone) across the type 1 diabetes (T1D) Exchange Quality Improvement Collaborative (T1DX-QI) during the COVID-19 pandemic. Metrics, site-level survey results, and examples of interventions conducted to support telemedicine in T1D are shown. Materials and Methods: Thirteen clinics (11 pediatric, 2 adult) provided monthly telemedicine metrics between December 2019 and August 2020 and 21 clinics completed a survey about their telemedicine practices. Results: The proportion of telemedicine visits in T1DX-QI before the pandemic was <1%, rising to an average of 95.2% in April 2020 (range 52.3%-99.5%). Three sites initially used mostly telephone visits before converting to video visits. By August 2020, the proportion of telemedicine visits decreased to an average of 45% across T1DX-QI (range 10%-86.6%). The majority of clinics (62%) performed both video and telephone visits; Zoom was the most popular video platform used. Over 95% of clinics reported using CareLink™, Clarity®, Glooko™, and/or t:connect® to view device data, with only one center reporting automated data upload into the electronic medical record. The majority of centers had multidisciplinary teams participating in the video visits. All sites reported reimbursement for video visits, and 95% of sites reported coverage for telephone visits early on in the pandemic. Conclusions: There was rapid adoption of telemedicine in T1DX-QI during the COVID-19 pandemic. Future insurance reimbursement for telemedicine visits and the ideal ratio of telemedicine to in-person visits in T1D care remain to be determined.

Treatment-Induced Neuropathy of Diabetes in Youth: Case Series of a Heterogeneous and Challenging Complication.

Treatment-induced neuropathy of diabetes (TIND) is a small fiber neuropathy precipitated by rapid correction of hyperglycemia. Literature on TIND in pediatric diabetes is scarce. We present 7 cases of TIND in children and young adults, increasing awareness of this condition in pediatric diabetes and broadening the scope of published knowledge.

Therapeutic Inertia in Pediatric Diabetes: Challenges to and Strategies for Overcoming Acceptance of the Status Quo.

Despite significant advances in therapies for pediatric type 1 diabetes, achievement of glycemic targets remains elusive, and management remains burdensome for patients and their families. This article identifies common challenges in diabetes management at the patient-provider and health care system levels and proposes practical approaches to overcoming therapeutic inertia to enhance health outcomes for youth with type 1 diabetes.