Transition of Diabetes Care: Pediatrics to Adult Nancy Drobycki, MSN, RN, CDE Preethy Varghese, MS, RN, CPNP-PC, CDE

Objectives Describe the impact of inadequately transitioning a person with Diabetes Mellitus from pediatric to adult care. Verbalize three American Diabetes Association Recommendations for adequately transitioning a person with Diabetes Mellitus from pediatric to adult care. Identify similarities and differences in the transition care needs for the person with Type 1 Diabetes Mellitus and the person with Type 2 Diabetes Mellitus.

What is Transition? “The process or a period of changing from one state or condition to another.” “The planned, purposeful movement of young adults from child-centered to adult-oriented health care systems.”

4 Critical Times to Assess, Provide & Adjust Diabetes Self-Management Training At time of diagnosis Annual assessment of nutrition, education and emotional needs When new complicating factors influence self-management When transitions in care occur American Diabetes Association, 2016

T1DM Prevalence (2014) Nationally Estimated to effect 1.25 million Americans 200,000 youth (under age 20 years) Annually: ~15,000 youth are newly diagnosed By 2050: 5 million people in the U.S. expected to have it (nearly 600,000 youth) Globally T1DM prevalence doubled in past 25 years and will double again in the next 15-20 years ~78,000 youth diagnosed annually Non-Hispanic white children/adolescents have highest rate Between 2001 and 2009 there was a 21% increase in the prevalence of T1D in people under age 20.3 $14B T1D-associated annual healthcare costs in the U.S. Less than one-third of people with T1D in the U.S. are achieving target blood glucose control levels6 T1D is associated with an estimated loss of life-expectancy of up to 13 years7

DM Prevalence in Transition Years Type 2 Diabetes Annually (USA) 5,000 youth under age 20 years diagnosed in 2008 & 2009 More than 20,000 youth under age 20 years had T2DM in 2009 Increasing prevalence: 1 in 3 babies born today ADA predicts ~2.3% annual increase Rates are ↑among youth aged 10-19 Especially among racial and ethnic minority groups

Emerging Adulthood 18-30 years of age Young adulthood does not immediately follow adolescence Youth delays assuming traditional role of parenting, full time job and marriage until late 20’s to early 30’s 2 phases First phase (18-24 years of age) Second phase ( 25-30 years of age)

First Phase (18-24 years) Transition occurs away from parents/home Geographically Economically Emotionally Competing demands Academic Economic Social

First Phase (18-24 years) Person may not believe they have enough skill or knowledge to completely assume diabetes management responsibilities Reluctant to transition to an adult provider due to: Feelings of invulnerability Direct rejection of adult control

Second Phase (25-30 years) Maturing sense of identity Assumption of adult-like role Intimate relationships Full time job Growing recognition of the importance of glycemic control Receptive to receiving HCP advice and improving health

Why is this important to know? Clinician’s approach must match and focus on the patient’s appropriate life stage for more effective diabetes management Impacts patient’s readiness to become an active participant in their care

Transition Barriers: Patient Normal developmental, physical, social and emotional issues of an emerging adult with the added stressor of a chronic disease Difficulty engaging patient due to competing priorities related to emerging adulthood Delay of emerging adulthood by American culture

Transition Barriers: Providers Pedi provider does not feel that adult provider is prepared to care for transitioning, emerging adult Pedi providers directly address the parents and not the patient, leading to patient disengagement Adult providers fail to recognize the special needs of the emerging adult Adult providers may not be as technologically proficient (pumps, CGM)

Transition Issues: “The Perfect Storm” Interruption of care for multiple reasons Leaving home Leaving usual provider No Diabetes Self-Management Training No ready-access to new provider Financial stressors/ ? Insurance Risky behaviors: Smoking Alcohol and drug abuse Poor diet

Transition Issues: “The Perfect Storm” Deterioration in glycemic control ↑ Acute complications Psychosocial/emotional/behavioral challenges Emergence of chronic complications

Diabetes Complications Microalbuminuria 30% of teens with T2DM 10% of teens with T1DM Hypertension Higher rate in teens with T2DM Retinopathy Rare among teens with T1DM, but more common than in T2DM Neuropathy (peripheral/sensory/autonomic) 20% of teens with DM

Case Studies

Case Study # 1 : Cindy 17 year old female with type 2 diabetes on multiple daily injections Lives with her mother who is an amputee due to complications of diabetes Works part time at a fast food restaurant High school senior struggling to pass a few of her classes Arrives to clinic late without her meter and does not keep a blood glucose log

Case Study # 1 : Cindy Often forgets to take insulin at dinner and bedtime Drives without testing blood glucose before driving No current boyfriend and feeling depressed at times Flat affect and hard to engage in conversation Medicaid insurance and cannot recall where she gets supplies Current HbA1c is >14% Last clinic visit was 9 months ago

True or False 1. Transition to adult care could have been initiated at least 1 year ago. 2. Cindy does not need a referral for mental health evaluation. 3. The provider should direct all conversation regarding diabetes education and diabetes care needs to Cindy’s mother.

True or False 4. Priorities for this appointment include addressing Cindy’s non-adherence to consistently taking insulin and testing blood glucose before driving. 5. It is not important to discuss contraception with Cindy at this time because she has no boyfriend.

Questions to Consider What life issues is Cindy dealing with in addition to her diabetes? How is Cindy’s current developmental stage affecting her ability to self-manage her diabetes? What are 2 of the most important issues impacting Cindy’s current glycemic control? What would you recommend that she address first? What barriers are impacting non-adherence to her treatment plan? How would you address these barriers with Cindy? Who should propose the solutions?

Case Study # 2: John 16 year old male with Type 1 diabetes on insulin pump therapy Lives with his parents and younger sister Junior in high school and plays football John and his mother arrive 30 minutes early for pump downloading Interactive-smiling and joking with mom Reports that his girlfriend often reminds him test his blood glucose He was recently started an unnamed anti-anxiety medication

Case Study # 2: John Reports testing his blood sugars 8-10 times daily Admits to omitting mealtime insulin ~50% of the time Admits to wearing CGM ~50% of the time Admits to not testing his blood glucose before driving Reports drinking alcohol socially Mother reports she did not adjust pump settings Pump download reveals blood glucose testing 1-2 times daily and incomplete CHO entry Mother upset at him for “lying to her” about DM self-care Current HbA1c is 10.5% Last clinic visit was 3 months ago

True or False 1. John’s lack of disease-management support from his family and friends is having a negative impact on his glycemic control. 2. It is uncommon to see a HbA1c mismatch with the blood glucose log or meter download in an emerging adult. 3. Alcohol use should not be discussed with John, because he is not of legal drinking age.

True or False 4. Priorities at this visit include discussing utilization of CGM and skin adhesion issues with physical activity. 5. A reasonable expectation for John is that he be able to adjust his pump settings with his mother’s supervision.

Questions to Consider What life issues is John dealing with in addition to his diabetes? How is John’s current developmental stage affecting his ability to self-manage his diabetes? What are 2 of the most important issues impacting John’s current glycemic control? What would you recommend that he address first? What barriers are impacting non-adherence to his treatment plan? How would you address these barriers with John? Who should propose the solutions?

ADA Recommendations for Transition Pediatric HCP/patient/family prepare for transition at least 1 year before transfer to adult HCP Preparation should include a more direct focus on diabetes self-care skills and behaviors for teen and parents - Gradual shifting of responsibilities and education from parent to patient - Focus on scheduling appointments, keeping adequate supplies of insulin, meds and strips/lancets

ADA Recommendations for Transition Preparation should include information about differences between pediatric and adult providers in their approaches to care Education about health insurance options and maintaining coverage

ADA Recommendations for Transition Pediatric provider should issue a handoff report that includes: Problem list Medication list Assessment of DM skills Summary of past BG control Diabetes-related comorbidities Mental health issues Referrals during pediatric care

ADA Recommendations for Transition HCP should recognize vulnerability to loss of consistent healthcare and difficulty adhering to DM self-care behaviors. Provide support and links to resources Create a directory of adult providers well versed in caring for young adults with diabetes Pediatric HCP should assist in making appointment with adult HCP 3-4 months after last pediatric appointment. Patient navigator or care ambassador for diabetes is recommended

ADA Recommendations for Transition Provider visits Every 3 months for insulin patients Every 3-6 months for T2DM not on insulin Follow screening guidelines for complications Risk assessment of macrovascular complications should start in childhood Management of BP and lipids should follow adult guidelines

ADA Recommendations for Transition Risky behaviors should be discussed with older teens and emerging adults by both pediatric and adult providers Providers should ensure patient gets ongoing primary and preventive healthcare Care should be coordinated, accessible, patient-centered, comprehensive, continuous, compassionate and culturally effective

ADA Recommendations for Transition Individualize care that is developmentally appropriate with an emphasis on adherence to diabetes self-management behaviors and consistent use of diabetes medications/insulin to prevent complications Evaluate and treat patient for eating disorders and affective disorders Emphasize the importance of having a mental health referral source who understands how to work with diabetes patients

YourDiabetesInfo.org/Transitions NDEP’s online Transitions tool is available at www.YourDiabetesInfo.org/transitions. This tool contains a Checklist, Clinical Summary, and Resource List that can be accessed from the main transition webpage you see on this slide. 35

Transitions: Checklist The Checklist provides a timeline to: Help physicians discuss and conduct transition planning with teens, young adults, and families Provide key actions for the family, teen or young adult, and physician/diabetes care team, and Suggest timeframes for physicians/diabetes care team and families to begin and complete various aspects of the transition process.

Transitions: Clinical Summary Page The Patient Clinical Summary Page is a one-page, double-sided document that provides an at-a-glance clinical summary for the new adult care team. It should be completed by the diabetes care team with the help of the patient. The patient and family should give the completed summary to the adult care provider. Included in the clinical summary is the problem list and pertinent medical history, medication name/dosing schedule, information on self monitoring, and information provided by the person transitioning to adult care.

Transitions: Resource List The Resource List offers has links to additional resources such as videos, message boards, social networks, workbooks, checklists, guides, books, etc. When available, Spanish-language resources have also been included. Site users can search by key topic areas such as: Diabetes Support Groups Type 1 Diabetes in College Finding a Physician, Diabetes Educator, Dietitian, or Education Program Visits to an Adult Care Physician Diabetes Education and Self-Care Motivation Parent Resources

Transitions: Promotional Tools NDEP has also developed promotional tools with information about transitioning from pediatric to adult health care for health care professionals and community organizations to help explain and promote this resource. We encourage you to promote the tools at upcoming conferences and events, on your organization's website, and in organizational e-newsletters and publications: Transitions Slide Set Transitions Flyer Transitions Article Transitions Half Page PSA

Resources Novo Nordisk/JDRF 2016

Questions?

References American Diabetes Association. (2016). Children and Adolescents. Diabetes Care: Standards of Medical Care in Diabetes-2016, 39, Supplement 1, S86-S93. Centers for Disease Control and Prevention. (2015). Diabetes Report Card-2014. Atlanta: US Department of Health and Human Services. Egan, E. C. (2015). Building the Bridge to Adult Diabetes Care: Making the Connection. The Diabetes Educator, 432-443.

References Hendricks, M. M. (2013). A Profile of Self-Care Behaviors in Emerging Adults with Type 1 Diabetes. The Diabetes Educator, 195-203. National Diabetes Education Program. (2015, 3 23). Transitions From Pediatric to Adult Health Care. Retrieved from http://ndep.nih.gov/transitions/ Peters, A. & Laffel, L. (2011). Diabetes Care for Emerging Adults: Recommendations for Transition From Pediatric to Adult Diabetes Care Systems. Diabetes Care, 2477-2485.