Health Care Transition and Glycemic Control in Young Adults with Type 1 Diabetes Katharine Garvey MD MPH Children’s Hospital Boston Transition Symposium Boston, MA April 27, 2012

Background Focus on U.S. health care transition for type 1 diabetes (T1D) Recent projects Qualitative focus group analysis of young adults with T1D currently receiving adult care at specialty clinic Survey of young adults with T1D currently receiving adult care at specialty clinic Focus of today’s presentation Survey of young adults with T1D who previously received pediatric diabetes care at tertiary care center National survey of adult endocrinologists

 Type 1 Diabetes An intensive level of daily self-management is required for optimal control in type 1 diabetes (T1D) Patient is truly at the center of his/her care Young adults with type 1 diabetes are at high risk for poor diabetes outcomes

Current Diabetes Transitions?? Pediatric Care Adult Care Faith, Trust, and Pixie Dust Slide courtesy of Nissa Askins 4

Transition in Type 1 Diabetes Studies in Canada and Europe have shown Significant delays in care Decreased adult follow-up visits Increased post-transition DM hospitalizations Patient dissatisfaction with transition process Emerging work in transition readiness assessment, transition coordination in pediatrics Few data on transition quality or post-transition outcomes Few U.S. data

Specific Aims – Survey Study Describe characteristics of health care transition in a large group of young adults with type 1 diabetes Evaluate the association between health care transition factors and glycemic control Determine patient-related and health-care related factors associated with glycemic control

Hypotheses Young adults with inadequate transition preparation are more likely to report a prolonged gap between pediatric and adult diabetes care Young adults with inadequate transition preparation are more likely to have suboptimal current glycemic control

Methods Developed an 85-item survey to evaluate the transition experiences of young adults with T1D Survey developed based on Extensive literature search of published transition data, both in T1D and other chronic illnesses Qualitative data from focus groups of young adults with T1D Conceptual model Content validity via expert review Cognitive testing with young adult T1D patients

Survey Domains Diabetes history Characteristics of pediatric vs. adult diabetes care Reasons for transition Transition timing, preparation, satisfaction, barriers Current support system, diabetes self-care Demographics

Methods Inclusion Criteria: Current age 22-30 years old T1D diagnosed at < 18 yrs old & while in pediatric care Now followed in the Adult Clinic at the Joslin Diabetes Center Survey sent in 3 mail waves between January and March 2011 Electronic web option, reminder phone calls Token gift + iPad2 incentive

Results Response Rate = 53% Survey Sent to n = 512 Denominator n = 484 12 undeliverable + 16 ineligible Denominator n = 484 Completed Surveys n = 258 Response Rate = 53% 11 11

Respondent Characteristics Mean ± SD or % Current age 26.7 ± 2.4 years Male 38% Caucasian 92% Diabetes duration 16.7 ± 5.5 years Age at transition to adult diabetes care 19.5 ± 2.9 years Most recent HbA1c (measured) 8.1 ± 1.3 Highest education ≥ college 81% Private insurance 90%

Results

Results 35% over 6 months

Results ADA Target < 7%

Results 8 survey items were developed to assess specific transition preparation

Transition Preparation “Yes” responses to all of the specific preparation items were highly correlated (p<0.05) with overall report of “mostly” or “completely” prepared This overall question was used as a dichotomous variable in analyses

Results *Mostly/Completely prepared/satisfied are highly correlated, p < 0.0001

Gaps Between Pediatric/Adult Care Factors Associated with a Prolonged Gap > 6 months Between Pediatric and Adult Care Variable Multivariate model Odds Ratio [95% CI] Mostly/Completely prepared for transition 0.47 [0.25,0.88] Pediatric A1c in year prior to transition (%) 1.18 [0.95,1.48] Age at transition (years) 0.95 [0.86,1.06] Education = college or greater 1.08 [0.48,2.43] Male 0.98 [0.53,1.82] ≥ 3 pediatric visits in year prior to transition 0.35 [0.19,0.63]

Young Adult HbA1c Variable Multivariate model Beta (S.E.), p-value Mostly/Completely prepared for transition -0.18 (0.16), p = 0.27 Pediatric A1c in year prior to transition (%) 0.49 (0.06), p < 0.0001 Age at transition (years) -0.008 (0.03), p = 0.77 Current Age (years) -0.08 (0.03), p = 0.025 Education college or greater -0.53 (0.21), p = 0.01 Male -0.14 (0.16), p = 0.38 Married 0.06 (0.21), p = 0.77 Living with parents -0.28 (0.23), p = 0.24 Living alone 0.13 (0.23), p = 0.56 Medicaid 0.17 (0.30), p = 0.57 * Also conducted sensitivity analysis in those who transitioned in the last 3 years

Limitations Non-response bias Recall bias Generalizability – highly educated, relatively advantaged population who have found their way to JDC Unmeasured factors associated with transition and A1c in young adulthood, e.g. self-determination, resilience

Conclusions Report of suboptimal preparation for transition is associated with a prolonged > 6 month gap between pediatric and adult care Surprisingly, in multivariate analyses, transition preparation is not significantly associated with young adult HbA1c Strong influence of pre-transition A1c, level of education Data suggest that “typical” transition preparation activities do not have a major positive influence Future work should examine interventions to Empower patients to transition more effectively Improve provider handoffs and young adult-centered care in pediatric and adult diabetes clinic settings

Acknowledgements Harvard Pediatric Health Services Research Fellowship (AHRQ T32 HS000063-17) Jonathan Finkelstein MD, MPH Howard Wolpert, MD Joseph Wolfsdorf MB, BCh Erinn Rhodes MD, MPH Ken Kleinman PhD Lori Laffel MD, MPH Meg Beste, BA