Katharine C. Garvey

Health Care Transition in Patients With Type 1 Diabetes:: Young adult experiences and relationship to glycemic control

OBJECTIVE To examine characteristics of the transition from pediatric to adult care in emerging adults with type 1 diabetes and evaluate associations between transition characteristics and glycemic control. RESEARCH DESIGN AND METHODS We developed and mailed a survey to evaluate the transition process in emerging adults with type 1 diabetes, aged 22 to 30 years, receiving adult diabetes care at a single center. Current A1C data were obtained from the medical record. RESULTS The response rate was 53% (258 of 484 eligible). The mean transition age was 19.5 ± 2.9 years, and 34% reported a gap >6 months in establishing adult care. Common reasons for transition included feeling too old (44%), pediatric provider suggestion (41%), and college (33%). Less than half received an adult provider recommendation and <15% reported having a transition preparation visit or receiving written transition materials. The most recent A1C was 8.1 ± 1.3%. Respondents who felt mostly/completely prepared for transition had lower likelihood of a gap >6 months between pediatric and adult care (adjusted odds ratio 0.47 [95% CI 0.25–0.88]). In multivariate analysis, pretransition A1C (β = 0.49, P < 0.0001), current age (β = −0.07, P = 0.03), and education (β = −0.55, P = 0.01) significantly influenced current posttransition A1C. There was no independent association of transition preparation with posttransition A1C (β = −0.17, P = 0.28). CONCLUSIONS Contemporary transition practices may help prevent gaps between pediatric and adult care but do not appear to promote improvements in A1C. More robust preparation strategies and handoffs between pediatric and adult care should be evaluated.

Transition to Adult Care for Youth with Type 1 Diabetes

Emerging adults with type 1 diabetes are at risk for poor glycemic control, gaps in medical care, and adverse health outcomes. With the increasing incidence in type 1 diabetes in the pediatric population, there will be an increase in the numbers of teens and young adults transferring their care from pediatric providers to adult diabetes services in the future. In recent years, the topic of transitioning pediatric patients with type 1 diabetes to adult diabetes care has been discussed at length in the literature and there have been many observational studies. However, there are few interventional studies and, to date, no randomized clinical trials. This paper discusses the rationale for studying this important area. We review both observational and interventional literature over the past several years, with a focus on new research. In addition, important areas for future research are outlined.

Health care transition in young adults with type 1 diabetes: barriers to timely establishment of adult diabetes care.

OBJECTIVE To examine barriers to health care transition reported by young adults with type 1 diabetes and associations between barriers and prolonged gaps between pediatric and adult diabetes care. METHODS We surveyed young adults aged 22 to 30 years with type 1 diabetes about their transition experiences, including barriers to timely establishment of adult diabetes care. We evaluated relationships between barriers and gaps in care using multivariate logistic regression. RESULTS The response rate was 53% (258 of 484 eligible subjects). Respondents (62% female) were 26.7 ± 2.4 years old and transitioned to adult diabetes care at 19.5 ± 2.9 years. Reported barriers included lack of specific adult provider referral name (47%) or contact information (27%), competing life priorities (43%), difficulty getting an appointment (41%), feeling upset about leaving pediatrics (24%), and insurance problems (10%). In multivariate analysis, barriers most strongly associated with gaps in care >6 months were lack of adult provider name (odds ratio [OR], 6.1; 95% confidence interval [CI], 3.0-12.7) or contact information (OR, 5.3; 95% CI, 2.0-13.9), competing life priorities (OR, 5.2; 95% CI, 2.7-10.3), and insurance problems (OR, 3.5; 95% CI, 1.2-10.3). Overall, respondents reporting ≥1 moderate/major barrier (48%) had 4.7-fold greater adjusted odds of a gap in care >6 months (95% CI, 2.8-8.7). CONCLUSION Significant barriers to transition, such as a lack of specific adult provider referrals, may be addressed with more robust preparation by pediatric providers and care coordination. Further study is needed to evaluate strategies to improve young adult self-care in the setting of competing life priorities.

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.

Patient-Provider Relationships Across the Transition From Pediatric to Adult Diabetes Care A Qualitative Study

Purpose The purpose of this study was to explore perceptions that emerging adults with type 1 diabetes (T1D) have of their patient-provider relationships across the transition from pediatric to adult care. Methods Twenty-six emerging adults with T1D (mean age 26.2 ± 2.5 years) participated in 5 focus groups stratified by current level of glycemic control (A1C). Coded audio-recorded data were analyzed using thematic analysis and aided by NVivo software. Results Three major themes emerged from the analysis: (1) loss and gain in provider relationships across the transition—patients expressed 3 key responses to leaving pediatric providers that differed by A1C levels: sad reluctance and “natural progression” (mean A1C ± SD 7.4% ± 0.6%) and wanting to go (mean A1C ± SD 9.8% ± 1.0%); (2) partners in care versus on one’s own—patients valued how adult providers’ collaborative conversations promoted their involvement and accountability compared to “parent-centric” interactions with pediatric providers, but they also expressed ambivalence over increased independence in adult care; (3) improving provider approaches to transition—patients recommended that pediatric providers actively promote emerging adults’ autonomy while maintaining parental support, communication with adult providers, and follow-up with transitioning patients. Conclusions Findings highlight the importance of enhanced provider awareness of T1D emerging adults’ complex feelings about the transition in care. Improved integration of individual- and family-centered approaches to developmentally tailored diabetes care is needed to augment patient and provider relationships.

Experiences of health care transition voiced by young adults with type 1 diabetes: a qualitative study

Objective This qualitative study aimed to explore the experience of transition from pediatric to adult diabetes care reported by posttransition emerging adults with type 1 diabetes (T1D), with a focus on preparation for the actual transfer in care. Methods Twenty-six T1D emerging adults (mean age 26.2±2.5 years) receiving adult diabetes care at a single center participated in five focus groups stratified by two levels of current glycemic control. A multidisciplinary team coded transcripts and conducted thematic analysis. Results Four key themes on the process of transfer to adult care emerged from a thematic analysis: 1) nonpurposeful transition (patients reported a lack of transition preparation by pediatric providers for the transfer to adult diabetes care); 2) vulnerability in the college years (patients conveyed periods of loss to follow-up during college and described health risks and diabetes management challenges specific to the college years that were inadequately addressed by pediatric or adult providers); 3) unexpected differences between pediatric and adult health care systems (patients were surprised by the different feel of adult diabetes care, especially with regards to an increased focus on diabetes complications); and 4) patients’ wish list for improving the transition process (patients recommended enhanced pediatric transition counseling, implementation of adult clinic orientation programs, and peer support for transitioning patients). Conclusion Our findings identify modifiable deficiencies in the T1D transition process and underscore the importance of a planned transition with enhanced preparation by pediatric clinics as well as developmentally tailored patient orientation in the adult clinic setting.

Transition experiences and health care utilization among young adults with type 1 diabetes

Background The purpose of this study was to describe the current status of adult diabetes care in young adults with type 1 diabetes and examine associations between health care transition experiences and care utilization. Methods We developed a survey to assess transition characteristics and current care in young adults with type 1 diabetes. We mailed the survey to the last known address of young adults who had previously received diabetes care at a tertiary pediatric center. Results Of 291 surveys sent, 83 (29%) were undeliverable and three (1%) were ineligible. Of 205 surveys delivered, 65 were returned (response rate 32%). Respondents (mean age 26.6 ± 3.0 years, 54% male, 91% Caucasian) transitioned to adult diabetes care at a mean age of 19.2 ± 2.8 years. Although 71% felt mostly/completely prepared for transition, only half received recommendations for a specific adult provider. Twenty-six percent reported gaps exceeding six months between pediatric and adult diabetes care. Respondents who made fewer than three diabetes visits in the year prior to transition (odds ratio [OR] 4.5, 95% confidence interval [CI] 1.2–16.5) or cited moving/relocation as the most important reason for transition (OR 6.3, 95% CI 1.3–31.5) were more likely to report gaps in care exceeding six months. Patients receiving current care from an adult endocrinologist (79%) were more likely to report at least two diabetes visits in the past year (OR 6.0, 95% CI 1.5–24.0) compared with those receiving diabetes care from a general internist/adult primary care doctor (17%). Two-thirds (66%) reported receiving all recommended diabetes screening tests in the previous year, with no difference according to provider type. Conclusion In this sample, transition preparation was variable and one quarter reported gaps in obtaining adult diabetes care. Nevertheless, the majority endorsed currently receiving regular diabetes care, although visit frequency differed by provider type. Because locating patients after transition was incomplete, our findings suggest the need for standardized methods to track transitioning patients.

Identifying the Unique Needs of Transition Care for Young Adults With Type 1 Diabetes

During the transition from adolescence to young adulthood, patients with type 1 diabetes must learn to independently manage their condition during a life stage that is often fraught with competing priorities and developmental challenges. For pediatric and adult health care providers who care for young adults with type 1 diabetes, the following are key items on the clinical agenda: 1. Identify risk factors for poor clinical outcomes and intervene therapeutically as indicated 2. Assess the young adults developmental stage and barriers to self-care and individualize treatment goals accordingly Before the era of intensive insulin therapy, the prognosis for young adults was often poor. Bryden et al.1 reported data on a cohort of young adults in the United Kingdom with baseline assessment during 1987–1988 at a mean age of 22 years and follow-up assessment during 1999–2000 at a mean age of 35 years. During this time, there was no significant improvement in A1C, and the proportion of severe complications increased from 3 to 37%; multiple complications were more common in women. In general, diabetes outcomes have markedly improved with the advent of intensive insulin therapy. For example, in a recent analysis of long-term complications throughout 30 years for subjects in the original Diabetes Control and Complications Trial (DCCT) cohort,2 the cumulative incidences of any proliferative retinopathy and nephropathy were 21 and 9%, respectively. By comparison, the authors cite that the 25-year cumulative incidences of proliferative retinopathy and nephropathy were 40–53 and 35%, respectively, in cohorts of patients that developed their diabetes 10–20 years before the subjects in the DCCT. However, despite such improvements, intensive management during adolescence does not always translate into optimal glycemic control in young adulthood, as illustrated by follow-up data from adolescent participants in the DCCT. At the end of the DCCT, there was a statistically significant difference …

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.

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

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.