Disease-Tailored Brief Intervention for Alcohol Use Among Youths With Chronic Medical Conditions: A Secondary Analysis of a Randomized Clinical Trial.

Importance: In the US, 25% of youths have a chronic medical condition (CMC). Alcohol use is prevalent among youths with a CMC and is associated with treatment nonadherence, simultaneous exposure to contraindicated medications, poor self-care, and elevated rates of progression to heavy and problem use by young adulthood. Preventive interventions targeting these youths are scarce and lack evidence about longer-term risk-stratified effects. Objective: To evaluate the 12-month effects of a preventive intervention for alcohol use among youths with a CMC reporting baseline no or low-risk alcohol use vs high-risk alcohol use, testing the hypothesis of no difference. Design, Setting, and Participants: This presepecified secondary analysis used data from a 2-group, parallel randomized clinical trial of the Take Good Care (TGC) intervention. Convenience samples of youths (aged 14-18 years) with a CMC, such as type 1 diabetes, juvenile idiopathic arthritis, or inflammatory bowel disease, were randomly assigned to the intervention or treatment as usual (TAU) between May 11, 2017, and November 20, 2018, and were followed up for up to 12 months. High-risk alcohol use was defined as heavy episodic (binge) alcohol use in the past 3 months and alcohol-related blackouts, injuries, vomiting, or emergency department visits in the past 12 months. Data were analyzed from September 21, 2023, to February 3, 2024. Interventions: The self-administered, tablet computer-based TGC intervention was developed with patient and expert input, and it delivers disease-tailored psychoeducational content about the effects of alcohol use on overall health, disease processes, and treatment safety and efficacy. Main Outcomes and Measures: The main outcome was self-reported frequency of alcohol use (in days) over the past 3 months, measured by a single validated question. Maximum likelihood methods incorporating all available data were used assuming data missing at random. Results: The trial included 451 participants (229 female youths [50.8%]), with a mean (SD) age of 16.0 (1.4) years. Of these youths, 410 (90.9%) participated in the 12-month follow-up. At baseline, 52 youths (11.5%) reported high-risk alcohol use. Among participants with high-risk alcohol use, the observed mean (SD) frequency of alcohol use from baseline to the 12-month follow-up decreased in the intervention group (from 6.3 [4.6] to 4.9 [4.3] days) and increased in the TAU group (from 5.5 [4.9] to 9.0 [5.8] days), with an adjusted relative rate ratio of 0.60 (95% CI, 0.38 to 0.94). There were no group differences among youths reporting no or low-risk alcohol use. Conclusions and Relevance: In this trial of a brief chronic illness-tailored preventive intervention, medically vulnerable youths with a high risk of alcohol use and harm decreased alcohol use. These findings support the use of a personalized preventive intervention with this group. Trial Registration: ClinicalTrials.gov Identifier: NCT02803567.

Transition to self-management among emerging adults with type 1 diabetes: a mixed methods study.

Introduction: Emerging adulthood is challenging for young people with type 1 diabetes (T1D). This study evaluated transition to diabetes self-management and perceptions of care transfer using mixed methods. Methods: An online survey queried demographics, management characteristics, diabetes knowledge, self-care readiness, adherence, and diabetes distress. T-tests compared survey scores between those with self-reported target A1c <7.0% versus ≥7.0%. Pearson correlations assessed associations between A1c and diabetes distress, stratified by A1c <7.0% versus ≥7.0%. Qualitative semi-structured interviews elicited perceptions of young adults; transcripts were analyzed using directed qualitative content analysis. Results: Of 141 participants (30% male, 84% non-Hispanic white) completing the survey, 41% self-reported target A1c <7.0%. Diabetes knowledge and self-care readiness scores did not differ between those with A1c <7.0% versus ≥7.0%, while diabetes distress was lower (45 ± 20 vs 52 ± 20, p=0.01) and adherence higher (77 ± 12 vs 71 ± 14, p=0.02) in those with A1c <7.0% versus ≥7.0%. Diabetes distress was significantly associated with glycemic outcomes in those reporting A1c ≥7.0% (R=0.36, p<0.01). Qualitative analysis (24 participants) revealed five themes and two sub-themes, notable for need for more mental health support, support from others with T1D, benefits of technology for care autonomy, and challenges of obtaining diabetes supplies. Discussion: Emerging adults with self-reported target A1c endorsed lower diabetes distress and higher adherence than those with elevated A1c. Mental health access, support from others with T1D, technology use, and guidance for supply acquisition may improve transition to self-management and care transfer for emerging adults with T1D.

Screening for Food Insecurity in a Pediatric Diabetes Program: Provider and Parent/Guardian Perspectives.

Food insecurity (FI) is associated with poor health outcomes in children, and studies have shown higher FI among children with diabetes mellitus. This study assessed provider (N = 22, 35.5% response rate) and parent/guardian (N = 207, 14.6% response rate) perspectives toward FI screening in a pediatric diabetes program. Among 22 providers, most "rarely" (54.5%) or "never" (27.3%) screened for FI although all felt that screening was at least "slightly important." Barriers included lack of time (63.6%), not remembering to screen (59.1%), lack of knowledge about how to address positive screens (45.5%), and being unsure how to screen (40.9%). Among 186 parent/guardians, only 24.1% had been asked about FI at a pediatric medical appointment, but only 8.6% disliked the idea of being asked by a medical provider at endocrinology visits. To be effective and sustainable, FI screening must fit within the visit flow, and providers need education on how to address positive screens.

Diabetes-Focused Health Care Utilization Among Adolescents and Young Adults With Type 1 Diabetes.

OBJECTIVE: To describe the current rates of health services use with various types of providers among adolescents and young adults (AYA) with type 1 diabetes (T1D) and evaluate which patient factors are associated with rates of service use from different provider types. METHODS: Using 2012-16 claims data from a national commercial insurer, we identified 18,927 person-years of AYA with T1D aged 13 to 26 years and evaluated the frequency at which: 1) AYA skipped diabetes care for a year despite being insured; 2) received care from pediatric or non-pediatric generalists or endocrinologists if care was sought; and 3) received annual hemoglobin A1c (HbA1c) testing as recommended for AYA. We used descriptive statistics and multivariable regression to examine patient, insurance, and physician characteristics associated with utilization and quality outcomes. RESULTS: Between ages 13 and 26, the percentage of AYA with: any diabetes-focused visits declined from 95.3% to 90.3%; the mean annual number of diabetes-focused visits, if any, decreased from 3.5 to 3.0; receipt of ≥2 HbA1c tests annually decreased from 82.3% to 60.6%. Endocrinologists were the majority providers of diabetes care across ages, yet the relative proportion of AYA whose diabetes care was endocrinologist-dominated decreased from 67.3% to 52.7% while diabetes care dominated by primary care providers increased from 19.9% to 38.2%. The strongest predictors of diabetes care utilization were younger age and use of diabetes technology (pumps and continuous glucose monitors). CONCLUSIONS: Several provider types are involved in the care of AYA with T1D, though predominate provider type and care quality changes substantially across age in a commercially-insured population.

Health Care Utilization Trends Across the Transition Period in a National Cohort of Adolescents and Young Adults With Type 1 Diabetes.

OBJECTIVE: Lack of effective transition from pediatric to adult care may contribute to adverse outcomes in young adults with type 1 diabetes. The understanding of outpatient and acute care utilization patterns across the adolescent to young adult transition age in type 1 diabetes populations is suboptimal in the U.S. RESEARCH DESIGN AND METHODS: We studied claims data from 14,616 individuals diagnosed with type 1 diabetes, aged 16-24 years, and enrolled in a large national health plan for ≥1 year from 2005 to 2012. Annual outpatient and emergency department visits and hospitalization rates were calculated at each age. Generalized estimating equations were used to assess the association of age-group (adolescents [age 16-18 years] vs. young adults [age 19-24 years]), outpatient visits, and sociodemographic variables with emergency department visit and hospitalization rates. RESULTS: Endocrinologist visits declined from 2.3 per year at age 16 years to 1.5 per year by age 22. Emergency department rates increased per year from 45 per 100 at age 16 to 63 per 100 at age 20, then decreased to 60 per 100 by age 24. Hospitalizations per year climbed from 14 per 100 at age 16 to 21 per 100 at age 19, then decreased to 17 per 100 by age 24. In statistical models, young adults experienced higher rates of emergency department visits (incidence rate ratio [IRR] 1.24 [95% CI 1.18, 1.31]) and hospitalizations (IRR 1.25 [95% CI 1.15, 1.36]) than adolescents. Additional significant predictors of emergency department visits and hospitalizations included female sex and Black race. Individuals with two or more endocrinologist visits per year were less likely to have emergency department visits and hospitalizations; higher income was also protective. CONCLUSIONS: Results highlight concerning increases in acute care utilization for young adults with type 1 diabetes who are less engaged with outpatient diabetes care and highlight socioeconomic risk factors that warrant further study.

Contrasting Social Media Use Between Young Adults With Inflammatory Bowel Disease and Type 1 Diabetes: Cross-sectional Study.

BACKGROUND: Social media is used by young adult patients for social connection and self-identification. OBJECTIVE: This study aims to compare the social media habits of young adults with inflammatory bowel disease (IBD) and type 1 diabetes (T1D). METHODS: This is a cross-sectional study of subjects from Boston Children's Hospital outpatient IBD and diabetes clinics. Patients above 18 years of age were invited to complete a brief anonymous survey, which asked about the various ways they use several social media platforms. RESULTS: Responses were received from 108 patients (92.5% response rate), evenly split across disease type. We found that 83% of participants spent at least 30 minutes per day on social media, most commonly on Instagram and Facebook. Although the content varied based on the platform, patients with IBD posted or shared content related to their disease significantly less than those with T1D (23% vs 38%, P=.02). Among Instagram users, patients with IBD were less likely to engage with support groups (22% vs 56%, P=.04). Among Twitter users, patients with IBD were less likely to seek disease information (77% vs 29%, P=.005). Among Facebook users, patients with IBD were less likely to post about research and clinical trials (31% vs 65%, P=.04) or for information seeking (49% vs 87%, P=.003). Patients with IBD were also less likely to share their diagnosis with friends or family in person. CONCLUSIONS: Young adults with IBD were less willing to share their diagnosis and post about or explore the disease on social media compared to those with T1D. This could lead to a sense of isolation and should be further explored.

Health Care Transition in Type 1 Diabetes: Perspectives of Diabetes Care and Education Specialists Caring for Young Adults.

PURPOSE: The purpose of the study was to describe experiences reported by diabetes care and education specialists caring for young adults with type 1 diabetes and to assess perceived deficiencies in clinical resources and barriers to care delivery. METHODS: A 60-item electronic survey was fielded through email to members of the Association of Diabetes Care and Education Specialists (ADCES). Respondents completed a survey consisting of: (1) clinical practice characteristics and respondents' demographics; (2) health care transition components (eg, referrals) and their perceived importance; (3) framework of current clinical diabetes care delivery and perceived need for additional support; and (4) perceived barriers regarding clinical care delivery. Statistical analyses included descriptive statistics, chi-square tests, and logistic regression. RESULTS: Respondents (N = 531, 96% female, median years in practice = 13; interquartile range = 7-20) represented 49 states plus the District of Columbia. Although 88% of respondents reported reviewing pediatric records as important/very important, only 22% often/always reviewed them. Although 58% of respondents noted easy access to mental health care providers for young adults, 50% stated a need for additional resources. Furthermore, diabetes care and education specialists without easy access to mental health professionals were significantly more likely to report barriers to diabetes management for young adults with depression, substance abuse, eating disorders, and developmental disabilities. CONCLUSION: Study findings highlight modifiable factors that may improve diabetes care coordination for transitioning young adults. Uniform approaches and increased access to trained mental health professionals may help support diabetes care and education specialists in their care of young adults with type 1 diabetes.

Improving pediatric endocrinology trainees' knowledge about insulin pumps and continuous glucose monitors with online spaced education: Technology Knowledge Optimization in T1D (TeKnO T1D).

OBJECTIVE: We explored the impact of TeKnO T1D, an online, case-based, spaced education curriculum about insulin pump and continuous glucose monitor (CGM) use in pediatric type 1 diabetes management. METHODS: Pediatric endocrinology fellows (n = 64) were randomized to receive an educational curriculum focused on either insulin pumps or CGMs. Fellows received interactive questions twice weekly via email or mobile app. Median time to completion was 76.5 days. The primary outcome was change in knowledge as measured by performance on multiple-choice questions (MCQ) from the pre-test to the post-test. RESULTS: Forty-eight of 64 (75%) learners completed the curriculum and assessments. The pump group improved from 35.0 ± 15% on the pre-test MCQs to 61.1 ± 17% on the post-test, a 12.2 absolute percentage point greater improvement on pump-specific items than the CGM group (P = .03). The CGM group improved from 30.3 ± 15% on the pre-test MCQs to 61.4 ± 21% on the post-test, a 28.7 absolute percentage point greater improvement on CGM-specific items than the pump group (P < .001). Both groups were more likely to report an appropriate level of understanding of their respective technologies after completing the corresponding curriculum. In thematic analysis of qualitative data, fellows indicated that knowledge gains led to improved patient care. There was universal agreement about enjoyment and effectiveness of the curricula. CONCLUSIONS: TeKnO T1D proved to be an engaging, effective way to improve endocrinology fellows' knowledge and confidence about insulin pumps and CGM use in the management of pediatric type 1 diabetes.

A Practice in Maturation: Current Perspectives on the Transition from Pediatric to Adult Care for Young Adults with Diabetes.

PURPOSE OF REVIEW: This review of available literature and resources highlights the challenges in transition from pediatric to adult care for young adults with diabetes, summarizes practical recommendations for facilitating the process, and identifies areas for improvement in current transition practice. RECENT FINDINGS: Observational studies highlight suboptimal transition preparation counseling, gaps between pediatric and adult care, and increased post-transition hemoglobin A1c and acute care utilization. Studies showing improved outcomes with later age at transition allows for an extended focus on transition preparation with an eye toward developmental maturity. Interventional studies suggest varying benefits of transition coordinators and support programs. The period of transition from pediatric to adult care is a time of in which patients are at high risk for adverse outcomes and loss to follow-up; however, careful attention to planning the process and tracking patient readiness along with skilled care coordination can contribute to transition success. The durability of interventional models, as well as generalizability to varied clinical settings, must be further tested.

Screening and Counseling for Alcohol Use in Adolescents With Chronic Medical Conditions in the Ambulatory Setting.

PURPOSE: We seek to determine how youth with chronic medical conditions experience alcohol screening and counseling. METHODS: Adolescents with type I diabetes, juvenile idiopathic arthritis, moderate persistent asthma, cystic fibrosis, attention deficit hyperactivity disorder, or inflammatory bowel disease were surveyed. Descriptive statistics and regression analysis quantified rates of asking and counseling about alcohol. RESULTS: Of 390 participants (75.1% white/non-Hispanic, 51.8% female, average age 16.4 years), 70% reported being asked about their alcohol use by a healthcare provider, and 76% reported receiving at least one message regarding alcohol and health. Of past year drinkers, 54% disclosed use to their provider. Only 2.0% of youth reported receiving the message "I should not drink." CONCLUSIONS: Most youth with chronic medical conditions were asked and counseled about alcohol use although few heard unambiguous recommendations to avoid alcohol consumption.

Pediatric Endocrinology Trainees' Education and Knowledge About Insulin Pumps and Continuous Glucose Monitors.

BACKGROUND: Recent data demonstrating a lack of improvement in average hemoglobin A1c levels despite the increased use of insulin pumps and continuous glucose monitors (CGMs) suggest that patients are not using these technologies optimally. Suboptimal provider understanding of these devices may be a contributing factor. METHODS: We sought to assess fellows' knowledge, attitudes, and practices regarding insulin pumps and CGMs using a mixed-methods survey. We polled 42 pediatric endocrinology fellows and 69 attending physicians in pediatric endocrinology using items on a five-point Likert scale. RESULTS: Perceived fellow knowledge of insulin pumps and CGMs was only 3.6 ± 1.0 and 3.6 ± 0.9, respectively. Despite consensus about the need for pediatric endocrinologists to understand these technologies, only 14.7% of fellows reported the presence of a formal curriculum about these technologies at their institutions. Potential gaps identified in fellows' knowledge include general use and troubleshooting, advanced insulin pump features, infusion sets and dermatological complications, systematic approach to data, interpretation and application of CGM data, and keeping pace with technological advances. CONCLUSIONS: Our data suggest suboptimal fellow knowledge and understanding of insulin pumps and CGMs in pediatric type 1 diabetes management, which is likely attributable to inadequate education in fellowship training programs. The development of formal educational curricula targeting areas of weakness identified in this survey may improve clinician knowledge of these technologies and ultimately impact patient education and care.

Preparation for Transition to Adult Care Among Medicaid-Insured Adolescents.

BACKGROUND: Parents of children with chronic illness consistently report suboptimal preparation for transition from pediatric- to adult-focused health care. Little data are available on transition preparation for low-income youth in particular. METHODS: We conducted a mailed survey of youth with chronic illness enrolled in 2 large Medicaid health plans to determine the quality of transition preparation using the Adolescent Assessment of Preparation for Transition (ADAPT). ADAPT is a new 26-item survey designed for 16- to 17-year-old youth to report on the quality of health care transition preparation they received from medical providers. ADAPT generates composite scores (possible range: 0%-100%) in 3 domains: counseling on transition self-management, counseling on prescription medication, and transfer planning. We examined differences in ADAPT scores based on clinical and demographic characteristics. RESULTS: Among 780 and 575 respondents enrolled in the 2 health plans, respectively, scores in all domains reflected deficiencies in transition preparation. The highest scores were observed in counseling on prescription medication (57% and 58% in the 2 plans, respectively), and lower scores were seen for counseling on transition self-management (36% and 30%, respectively) and transfer planning (5% and 4%, respectively). There were no significant differences in composite scores by health plan, sex, or type of chronic health condition. CONCLUSIONS: The ADAPT survey, a novel youth-reported patient experience measure, documented substantial gaps in the quality of transition preparation for adolescents with chronic health conditions in 2 diverse Medicaid populations.

Health Care Transition Preparation and Experiences in a U.S. National Sample of Young Adults With Type 1 Diabetes.

OBJECTIVE: Young adults with type 1 diabetes transitioning from pediatric to adult care are at risk for adverse outcomes. We developed a survey to evaluate transition experiences in two groups of young adults with type 1 diabetes, before (PEDS) and after (ADULT) transition to adult care. RESEARCH DESIGN AND METHODS: We fielded an electronic survey to young adults (18 to <30 years) at 60 T1D Exchange Clinic Registry centers. RESULTS: Surveys were completed by 602 young adults, 303 in the PEDS group (60% female, age 20 ± 2 years) and 299 in the ADULT group (62% female, age 24 ± 3 years). In the PEDS group, mean anticipated transition age was 22 ± 2 years; 64% remained in pediatric care because of emotional attachment to the provider. The ADULT group transitioned at age 19 ± 2 years, mainly after pediatric provider recommendation. More than 80% of respondents reported receiving counseling on type 1 diabetes self-management and screening tests from pediatric providers, but less than half (43% PEDS and 33% ADULT) reported discussing reproductive health. In the PEDS group, half had discussed transfer with pediatric providers. Of the ADULT participants, 63% received an adult provider referral, and 66% felt mostly/completely prepared to transition. ADULT participants with fewer pretransition pediatric visits or who felt unprepared for transition had increased odds of gaps >6 months between pediatric and adult care. Receipt of transition preparation counseling was not associated with self-reported hemoglobin A1c <7.0% in either group. CONCLUSIONS: These results support the need for intensive efforts to integrate transition preparation counseling and care coordination into pediatric type 1 diabetes care.

Fertility and sexual function: a gap in training in pediatric endocrinology.

BACKGROUND: Infertility and sexual dysfunction result from many different pediatric conditions and treatments and can profoundly impact quality of life. The American Academy of Pediatrics (AAP) has recommended consulting "fertility specialists" for counseling, but it remains unclear who these specialists are. Our objective was to assess whether pediatric subspecialists who manage hypogonadism and/or genitourinary conditions feel adequately trained to provide fertility and sexual function counseling. METHODS: An online survey was distributed to members of Pediatric Endocrine Society (PES), Society for Pediatric Urology (SPU), and North American Society for Pediatric and Adolescent Gynecology (NASPAG). Providers' comfort in counseling various age groups about fertility and sexual function was assessed via a five-point Likert scale. Providers reported whether they felt adequately trained in these areas. RESULTS: Two hundred and eighty-four surveys were completed by endocrinologists, 124 surveys by urologists, and 41 surveys by gynecologists. Respondents (44% male, 86% Caucasian) represented 39 states and Canada. Seventy-nine percent were at academic centers. Thirty-four percent of providers had been practicing for >20 years. Comfort level was variable and lowest in young males. Ninety-one percent of pediatric endocrinologists reported routinely seeing patients at risk for infertility, but only 36% felt adequately trained in fertility, and 25% felt adequately trained in sexual function. CONCLUSIONS: Infertility and sexual dysfunction are often overlooked in pediatric care. Our results suggest that pediatric endocrinologists, who frequently manage male and female hypogonadism, should also receive formal training in these areas. Optimizing counseling would help prevent missed opportunities for fertility preservation and alleviate distress among patients and families.

Perspectives on care for young adults with type 1 diabetes transitioning from pediatric to adult health systems: A national survey of pediatric endocrinologists.

BACKGROUND: Healthcare transition from pediatric to adult care for young adults (YA) with type 1 diabetes (T1D) is associated with risk of adverse outcomes. Consensus recommendations exist from US professional societies on transition care for YA with T1D, but it is not known whether they have been widely adopted. We describe experiences, barriers, and provider characteristics associated with transition care in a national sample of pediatric endocrinologists. METHODS: US pediatric endocrinologists identified through the American Medical Association Physician Masterfile were sent an electronic survey. RESULTS: Response rate was 16% (164/1020) representing 32 states. The majority of pediatric endocrinologists (age 44 ± 10; years in practice 12 ± 11) were female (67%) and worked in academic centers (75%). Main reasons for transfer were age (49%) and glycemic control (18%). Barriers to transition included ending long-therapeutic relationships with patients (74%), lack of transition protocols (46%), and perceived deficiencies in adult care (42%). The majority of pediatric endocrinologists reported lack of transition training (68%); those who received training were less likely to have difficulty ending patient relationships [odds ratio (OR) = 0.39, P = .03], more likely to perform patient record transfer to adult systems (OR=1.27, P = .006), and less likely to report patient returns to pediatric care after transfer (OR=0.49, P = .01), independent of endocrinologist gender, years in practice, or practice type. CONCLUSIONS: There is wide variation in transition care for YA with T1D among US pediatric endocrinologists despite consensus recommendations. Dissemination of educational programming on transition care and provision of actionable solutions to overcome local health system and perceived barriers is needed.

A Screening Tool for Assessing Alcohol Use Risk among Medically Vulnerable Youth.

BACKGROUND: In an effort to reduce barriers to screening for alcohol use in pediatric primary care, the National Institute on Alcoholism and Alcohol Abuse (NIAAA) developed a two-question Youth Alcohol Screening Tool derived from population-based survey data. It is unknown whether this screening tool, designed for use with general populations, accurately identifies risk among youth with chronic medical conditions (YCMC). This growing population, which comprises nearly one in four youth in the US, faces a unique constellation of drinking-related risks. METHOD: To validate the NIAAA Youth Alcohol Screening Tool in a population of YCMC, we performed a cross-sectional validation study with a sample of 388 youth ages 9-18 years presenting for routine subspecialty care at a large children's hospital for type 1 diabetes, persistent asthma, cystic fibrosis, inflammatory bowel disease, or juvenile idiopathic arthritis. Participants self-administered the NIAAA Youth Alcohol Screening Tool and the Diagnostic Interview Schedule for Children as a criterion standard measure of alcohol use disorders (AUD). Receiver operating curve analysis was used to determine cut points for identifying youth at moderate and highest risk for an AUD. RESULTS: Nearly one third of participants (n = 118; 30.4%) reported alcohol use in the past year; 86.4% (106) of past year drinkers did not endorse any AUD criteria, 6.8% (n = 8) of drinkers endorsed a single criterion, and 6.8% of drinkers met criteria for an AUD. Using the NIAAA tool, optimal cut points found to identify youth at moderate and highest risk for an AUD were ≥ 6 and ≥12 drinking days in the past year, respectively. CONCLUSIONS: The NIAAA Youth Alcohol Screening Tool is highly efficient for detecting alcohol use and discriminating disordered use among YCMC. This brief screen appears feasible for use in specialty care to ascertain alcohol-related risk that may impact adversely on health status and disease management.

Health Care Transition in Young Adults With Type 1 Diabetes: Perspectives of Adult Endocrinologists in the U.S.

OBJECTIVE: Young adults with type 1 diabetes transitioning from pediatric to adult care are at risk for adverse outcomes. Our objective was to describe experiences, resources, and barriers reported by a national sample of adult endocrinologists receiving and caring for young adults with type 1 diabetes. RESEARCH DESIGN AND METHODS: We fielded an electronic survey to adult endocrinologists with a valid e-mail address identified through the American Medical Association Physician Masterfile. RESULTS: We received responses from 536 of 4,214 endocrinologists (response rate 13%); 418 surveys met the eligibility criteria. Respondents (57% male, 79% Caucasian) represented 47 states; 64% had been practicing >10 years and 42% worked at an academic center. Only 36% of respondents reported often/always reviewing pediatric records and 11% reported receiving summaries for transitioning young adults with type 1 diabetes, although >70% felt that these activities were important for patient care. While most respondents reported easy access to diabetes educators (94%) and dietitians (95%), fewer (42%) reported access to mental health professionals, especially in nonacademic settings. Controlling for practice setting and experience, endocrinologists without easy access to mental health professionals were more likely to report barriers to diabetes management for young adults with depression (odds ratio [OR] 5.3; 95% CI 3.4, 8.2), substance abuse (OR 3.5; 95% CI 2.2, 5.6), and eating disorders (OR 2.5; 95% CI 1.6, 3.8). CONCLUSIONS: Our findings underscore the need for enhanced information transfer between pediatric and adult providers and increased mental health referral access for young adults with diabetes post-transition.

Development and Validation of the Adolescent Assessment of Preparation for Transition: A Novel Patient Experience Measure.

PURPOSE: Significant gaps exist in health care transition (HCT) preparation that can impact care and outcomes in young adults with chronic illness. No quality measure exists to directly assess adolescent experiences of HCT preparation. Our objective was to develop an adolescent-reported measure of the quality of HCT preparation received from pediatric health care providers. METHODS: The Adolescent Assessment of Preparation for Transition (ADAPT) is a 26-item mailed survey designed for completion by 16- and 17-year-old adolescents with a chronic health condition. Adolescents from three samples (two large Medicaid insurance plans [n = 3,000 each] and one large tertiary care pediatric hospital [n = 623]) were mailed the survey. An iterative developmental process included focus groups and cognitive interviews, and validity was assessed using confirmatory factor analysis and ordinal reliability coefficients. RESULTS: Reliability and validity was evaluated for the following three prespecified composite measures: (1) counseling on transition self-management; (2) counseling on prescription medication; and (3) transfer planning. Across the three samples, all but one measure had good internal consistency (ordinal reliability coefficient ≥ .7). Confirmatory factor analysis using tetrachoric correlation coefficients was stable across samples and supported the construct validity of the first two composite measures. CONCLUSIONS: ADAPT is a reliable, validated instrument measuring the quality of HCT preparation experiences reported by adolescents with chronic disease. ADAPT will enable clinical programs and health care delivery systems to assess the quality of HCT preparation and provide targets for improvement in adolescent counseling related to transition.

Developmental changes in the roles of patients and families in type 1 diabetes management.

Developmentally-tailored diabetes self-care education and support are integral parts of contemporary multidisciplinary T1D care. The patient with T1D must have the support of the family and the diabetes team to maintain the rigors of diabetes management, but the specific roles of patients and families with regard to daily diabetes tasks change considerably throughout the developmental span of early childhood, middle childhood/school-age years, and adolescence. This review provides a framework of key normative developmental issues for each of these developmental stages. Within this context, ideal family diabetes management is reviewed within each developmental stage and anticipated challenges that can arise during these stages and that can adversely impact diabetes management are presented. This paper also summarizes empirical evidence for specific intervention and care strategies to support optimal diabetes management across these stages in order to maximize opportunities for a successful transfer of diabetes management tasks from parents to maturing youth. Finally, the review provides an emphasis on approaches to promote family teamwork and adolescent diabetes self-care adherence as well as opportunities to use novel technology platforms as a means to support optimal diabetes management.