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 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. 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.

OBJECTIVE We sought to develop and pilot a new measure, the Diabetes-Specific Risk-Taking Inventory (DSRI), to assess unhealthy risk-taking behaviors among adolescents with type 1 diabetes. Methods Thirteen diabetes health care providers, 30 adolescents with type 1 diabetes (aged 15–19 years, 60% female, mean A1C 8.7% [72 mmol/mol], and 33% on insulin pumps), and the adolescents’ caregivers rated the perceived riskiness of each item on the DSRI. Adolescents completed the DSRI, for which they reported how often they engaged in 34 behaviors that could place them at risk for acute complications of type 1 diabetes or out-of-range blood glucose levels. Adolescents also completed the risk-taking subscale from the Risk-Taking and Self-Harm Inventory for Adolescents, and parents completed the parent-proxy Diabetes Management Questionnaire. Mean A1C during the previous year was obtained via medical chart review. Results Results indicated good content validity and feasibility for using the DSRI in a research context, as 100% of adolescents who consented to the study completed the measure. The DSRI was positively correlated with general risk-taking and negatively correlated with diabetes management, indicating preliminary evidence of convergent validity. The DSRI also correlated with A1C. Conclusion This pilot study extends our previous work in developing a conceptual model for illness-specific risk-taking. The DSRI is a promising new measure to assess illness-specific risk-taking, including unhealthy risk-taking behaviors, for adolescents with type 1 diabetes.

Despite significant pharmacological and technological advances in the treatment of type 1 diabetes, the majority of youth in the United States do not meet the American Diabetes Association’s recommended A1C goal. Understanding and managing glycemic variability is important in children and adolescents. Because A1C provides an incomplete picture of day-to-day glycemic fluctuations, continuous glucose monitoring (CGM)-derived metrics are a promising addition to address glycemic management challenges in youth with diabetes. In this article, we discuss how to develop practical strategies to optimize the use of CGM in the pediatric population, interpret the valuable data it provides, and develop personalized and actionable treatment goals.

OBJECTIVE In response to the coronavirus disease 2019 (COVID-19) pandemic and social distancing guidelines, our pediatric diabetes team rapidly changed the format of conducting diabetes clinic from in person to telehealth. We compared the actual number and rate of completed, canceled, and no-show visits between an 8-week period in 2019, when we exclusively conducted visits in person and the same 8-week period in 2020, during the COVID-19 quarantine, when we exclusively conducted visits via telehealth. METHODS We used electronic health record data for all patients, as well as Dexcom continuous glucose monitoring data collected for a subset of youths during the COVID-19 quarantine and the immediate pre–COVID-19 period. RESULTS Although there was a difference in the absolute number of in-person versus telehealth visits canceled during these two time periods, there was no difference in the rates of completed, canceled, and no-show visits completed in person or via telehealth. This finding suggests that, despite a rapid shift to a completely new health care delivery model, our providers completed a similar rate of patient care via telehealth during the COVID-19 quarantine and that telehealth may be a feasible method for providing diabetes care. However, our results also suggested that youths’ glucose management was less optimal during the quarantine period. CONCLUSION COVID-19 presented an opportunity to adopt and test the feasibility of using a telehealth delivery model for routine diabetes care. Yet, to make telehealth a viable treatment delivery alternative will likely involve the uptake of new clinic procedures, investment in institutional infrastructure, and team-based flexibility.

AIMS Conversations about diabetes complications with adolescents and parents can be difficult and emotionally charged. To better inform conversations between providers and families, we sought adolescent and parent perspectives regarding their knowledge of long-term complications (LTCs), where they receive this information, and what they would like to learn from clinicians. METHODS Adolescents with type 1 diabetes and parents of adolescents with type 1 diabetes participated in semistructured interviews querying knowledge of LTCs, sources of information, and preferred ways for providers to discuss LTCs. Interview transcripts were coded and categorized into central themes by content analysis. RESULTS Participants included 22 adolescents (17.4 ± 1.7 years of age, diabetes duration 9.7 ± 4.0 years) and 25 parents (41–60 years of age, 84% mothers). Five themes related to complications were identified: 1) “Limited Adolescent Knowledge of Complications,” 2) “Discussing Complications Is Important but Not Now or Not for Me,” 3) “Outside Sources Overestimate Risk,” 4) “Avoid Scare Tactics” and 5) “Emphasize Prevention.” Adolescent and parent perspectives were similar, although parents showed greater understanding of complications. CONCLUSION When discussing complications, individualized, factual, positive, and prevention-focused conversations may be better received by adolescents with type 1 diabetes and their families.

OBJECTIVE To assess the use of a portable retinal camera in diabetic retinopathy (DR) screening in multiple settings and the presence of associated risk factors among children, adolescents, and young adults with type 1 diabetes. DESIGN AND METHODS Five hundred youth with type 1 diabetes of at least 1 year’s duration were recruited from clinics, diabetes camp, and a diabetes conference and underwent retinal imaging using a nonmydriatic fundus camera. Retinal characterization was performed remotely by a licensed ophthalmologist. Risk factors for DR development were evaluated by a patient-reported questionnaire and medical chart review. RESULTS Of the 500 recruited subjects aged 9–26 years (mean 14.9, SD 3.8), 10 cases of DR were identified (nine mild and one moderate nonproliferative DR) with 100% of images of gradable quality. The prevalence of DR was 2.04% (95% CI 0.78–3.29), at an average age of 20.2 years, with the youngest affected subject being 17.1 years of age. The rate of DR was higher, at 6.5%, with diabetes duration >10 years (95% CI 0.86–12.12, P = 0.0002). In subjects with DR, the average duration of diabetes was 12.1 years (SD 4.6, range 6.2–20.0), and in a subgroup of clinic-only subjects (n = 114), elevated blood pressure in the year before screening was associated with DR (P = 0.0068). CONCLUSION This study in a large cohort of subjects with type 1 diabetes demonstrates that older adolescents and young adults (>17 years) with longer disease duration (>6 years) are at risk for DR development, and screening using a portable retinal camera is feasible in clinics and other locations. Recent elevated blood pressure was a risk factor in an analyzed subgroup.

OBJECTIVE | To explore expectations for transition to adult care and experiences with transition planning among adolescents and young adults with type 1 diabetes and an A1C >9% at a tertiary care U.S. pediatric center. METHODS | We conducted semi-structured interviews in a purposive sample of patients 14–23 years of age who had had type 1 diabetes for at least 1 year and had an A1C >9%. A multidisciplinary team conducted iterative thematic analysis with deductive and inductive coding aided by NVivo software. RESULTS | Fourteen subjects participated (nine adolescents and five young adults, mean age 17.1 ± 3.2 years, 57% male, 79% Caucasian, 14% Hispanic, diabetes duration 8.2 ± 4.6 years, mean A1C 10.0 ± 0.8% for adolescents and 10.1 ± 0.7% for young adults). Qualitative analysis yielded four key themes. The first was lack of formal preparation; participants of all ages demonstrated a lack of preparation for transition and ignorance about the process, describing it as coming “out of the blue.” The second was a desire for delayed and gradual transition; participants wanted to defer being “serious” about transition to a later/uncertain date, with a preference to “wait until I’m older” among all ages. Participants described ideal transition as a gradual process, taking place “a little at a time.” The third was attachment to pediatric providers; participants demonstrated a nearly universal attachment to and “familiarity” with their pediatric diabetes care providers and expressed worries about an “uncomfortable” transition to adult providers. The fourth was concern about an impersonal adult care setting: participants perceived adult care as “formal,” “scarier,” and “tougher,” with increased criticism about poor control; participants expressed fear that adult providers would not “know me” or appreciate “my diabetes journey.” CONCLUSION | We demonstrated a lack of transition preparation and anxiety about transition and adult care among youth with type 1 diabetes and elevated A1C. Our results may help guide early, iterative pediatric transition counseling, with a special focus on addressing attachment and fears about adult diabetes care.

Adolescents with diabetes have a higher prevalence of depression compared with their peers. The American Diabetes Association recommends routine mental health screening for youth with diabetes. This screening is often conducted through accessible and free depression screeners, such as the nine-item Patient Health Questionnaire (PHQ-9). Although the PHQ-9 has been validated for use in adolescents and with other medical conditions, it has yet to be validated for use in pediatric diabetes. This study evaluated adolescents’ depression symptom endorsement through retrospective review of PHQ-9 screening and semi-structured interviews with a mental health provider in a multidisciplinary diabetes clinic (patients with type 1 or type 2 diabetes). Adolescent participants (n = 96) screened during one to three separate visits (n = 148) endorsed some depressive symptoms in 56% of visits (n = 84) and moderate to severe symptoms in 6% of visits on the PHQ-9. Approximately 95% of study participants did not meet the clinic cutoff for further evaluation, but greater rates of depression were endorsed in youth with type 1 diabetes. Low mood was endorsed at a higher rate during a semi-structured interview with embedded mental health providers than on the PHQ-9. Symptoms specific to low mood, including anhedonia, sleep disturbance, concentration disturbance, motor disturbance, and thoughts of death/self-harm, were more frequently endorsed on the PHQ-9 than during the interview. Although the PHQ-9 is a good screening tool, the availability of mental health providers in diabetes clinics is important to address specific endorsed symptoms and place them in perspective based on specialized training. Until more definitive research is available on the sensitivity and specificity of this measure in this population and setting, a two-part screening approach that includes both the screening questionnaire and a brief semi-structured interview is warranted.

BACKGROUND | Young adulthood is a vulnerable developmental period associated with increased risk for suboptimal health outcomes in youth with type 1 diabetes. Psychosocial factors have been associated with self-management and glycemic control in younger populations, but the extent to which these associations exist among young adults is poorly understood. This study aimed to examine the psychosocial functioning of young adults with type 1 diabetes and associated clinical outcomes. METHODS | Participants included young adults (n = 44) between the ages of 18 and 23 years in a pediatric setting who were preparing to transition to adult care. All participants completed self-report measures of psychosocial functioning at baseline as part of this longitudinal observational study. Outcome data included glycemic control, frequency of blood glucose monitoring, and self-management ratings at baseline and 1-year follow-up. RESULTS | Young adults with type 1 diabetes reported higher levels of depressive symptoms, lower self-efficacy, and more risk behaviors compared with previously published scores for adolescents. Young adults also reported greater resilience and transition readiness than their younger counterparts. Psychosocial variables were differentially related to glycemic control and frequency of blood glucose monitoring both cross-sectionally and longitudinally. CONCLUSION | This study provides key information about the psychosocial functioning of young adults with type 1 diabetes. It identifies relevant psychosocial factors that are associated with meaningful health outcomes during the transition preparation period. These findings may inform the development of clinical programs aimed at promoting transition preparation and health outcomes in young adults with type 1 diabetes.

OBJECTIVE Daily self-monitoring of blood glucose (SMBG) is essential for type 1 diabetes management yet is challenging during adolescence. Ecological momentary assessment (EMA) is the repeated sampling of behaviors and experiences in real time in the natural environment. The purpose of this study was to evaluate 1) the validity of self-reported SMBG values via text message–delivered EMA surveys compared with objective SMBG values via glucose meters and 2) in-the-moment motivators and barriers to performing SMBG in a pediatric type 1 diabetes population. Methods Youth (n = 62, aged 11–21 years) with type 1 diabetes received three text messages daily for 10 days containing surveys inquiring about SMBG engagement. Objective SMBG values were downloaded from glucose meters. Results On average, participants reported performing SMBG 4 times/day. Of the self-reported SMBG values, 39.6% were accurate. Inaccurate values included additions (i.e., self-reported value with no objective value), omissions (i.e., objective value with no self-reported value), and alterations (difference between self-report and objective SMBG values ≥10 mg/dL). Of the matched pairs of self-reported and objective SMBG values, 41.3% were altered. Bland–Altman plots determined that the mean difference between self-reported and objective glucose data were −5.43 mg/dL. Participants reported being motivated to check their blood glucose because it was important for their health, and reported barriers included wanting to ignore the task, forgetting, and not having devices. Conclusion Youth’s self-reported SMBG values may not align with objective readings. The results of this study can facilitate future research to determine individual factors related to SMBG and accuracy of self-reporting.

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.

Youth with diabetes frequently have limited access to traditional camps because of the need for accessible medical staff. With organized camping becoming more specialized with regard to meeting the needs of youth, there is an increased interest in developing and examining the efficacy of programs that serve individuals in specific illness groups, such as youth with type 1 diabetes. In a collaborative effort between a local university, a diabetes center of a local hospital, and the Lions Club, a diabetes camp was created to assist youth in the management of their diabetes. Data were collected over the 3-day family diabetes camp through three approaches: a pre- and post-program resiliency-based questionnaire, the 14-item Camper Learning Scale, and open-ended questions for parents of children with diabetes who were involved in camp. Wilcoxon t tests were used to analyze any differences between pre- and post-program scores on resiliency. The results indicated a positive increase of parents’ perceptions of their child’s resiliency (Z = –1.833, P = 0.67). Findings from the Camper Learner Scale indicated that 77.14% of campers felt they “learned a little” or “learned a lot” about crucial youth development outcomes (e.g., independence). Finally, direct content analysis of the qualitative measures indicated several themes among parent respondents, which were generalized into three categories: motivation, community, and challenges. Diabetes camps and family diabetes camps have a great opportunity to address some of the challenges young people face while living with the second most common chronic illness facing youth.