Ana M. Artiles, RN, CDE and Margo Small MSW, RSW. Diabetes Team SickKids

Objectives To understand the concept of transition in adolescent health care delivery To appreciate how transition impacts diabetes management and follow-up To recognize the challenges associated with transitional care from all perspectives To identify ways to support youth with diabetes in making a successful transition To learn about diabetes-specific transitional tools utilized within the pediatric setting

Entering school Pre-adolescence Graduation Adult care adolescence Dependence Interdependence

Why do young adults drop out?

Dropping out of Care: A Serious Risk of Transition Results in missed opportunities for: Early detection and treatment of complications Management intensification Psychosocial support Developmentally-based education Can lead to: Deterioration of metabolic control Important costs to the healthcare system

DCCT: Adults vs. Teens Combined Cohort HbA1c (%): Conventional 8.9% Intensive 7.2% Adolescents (193/1441) Conventional 9.8% Intensive 8.1% Insulin ~0.7u/kg/day Insulin ~ 1 u/kg/day

Metabolic Memory The intensively treated cohorts in the DCCT continued to maintain an advantage over the conventionally treated group years later with decreased incidence of diabetes related complications despite having similar A1c levels (~8%) Long-lasting protective effects of having tight metabolic control in reducing long-term complications as evidenced by the EDIC and UKPDS studies.

Transition vs. Transfer Transition is a process of growing up ready for adult life A purposeful, planned movement of youth with chronic health conditions from child-centered to adult-oriented care Transfer is a one time event Pediatric health care T r a n s i t i o n Good 2 Go Transition Adult health care Transfer of care = point in time (Blum 1993, Rosen, 2006)

Principles of Transition Start early; promote active participation in health management Involve the child/teen and family in transition planning Identify adult health care providers early Ensure good information transfer Reframe leaving paediatrics as an achievement Rapley & Davidson 2010; Kennedy 2007; Provinical Council for Maternal and Child Health, 2009

Objectives To understand the concept of transition in adolescent health care delivery To appreciate how transition impacts diabetes management and follow-up To recognize the challenges associated with transitional care To identify ways to support youth with diabetes in making a successful transition To learn about diabetes-specific transitional utilized within the pediatric setting

Characteristics of Lost to Follow-up Diabetes Patients The Sick Kids Experience Purposes of transition research study Definition of compliance Cohort analytic survey administered retrospectively Study Population 41 N (26 male, 15 female)

Biological and Disease Variables and Follow-up Status At or Prior to Discharge Variable Compliant N= 31 S.D. Non-Compliant N= 10 S.D. Diabetes Duration (yrs) 8.2 ±.42 7.2 ± 3.9 Mean HbA1c 0-12 mth pre-discharge 13-24 mth pre-discharge 9.0 ± 1.8 8.7 ± 1.84 10.6 ± 1.5 * 10.1 ± 1.7 * Mean # clinic visit prior yr 3.5 ±.88 2.6 ±.52** Hospitalizations in previous yr 6 (19%) 6 (60%)* Referral Documented 27 (87%) 4 (40%) *p <.05, **p <.01

Biological and Disease Variables and Follow-up Status From the Time of Discharge From the Pediatric Clinic Variable Compliant N= 31 S.D. Non-Compliant N= 10 S.D. Current Age (yrs) 21.2 ±.54 21.6 ±.64 Current Diabetes Duration (yrs) Report Chronic Complications Mean No. Hospitalizations 11.9 ± 4.4 11.0 ± 4.48 9 (29%) 3 (33%) 0.6 ±.85 1.4 ± 1.35 ** Multiple (>1) Admissions 2 (6.4%) 5 (50%) ** p <.01

Levels of influence on teens appointment keeping behavior

Developmental Tasks of Adolescents Independence from parents Adopting peer codes and lifestyles Assigning increased importance to body image Establishing sexual, ego, vocational identities

Teen Brain

The Brain and Implications for Transition Adolescent is expected to take on tasks Self management of Diabetes Plan ahead for appointments Arrange to be away from school or work Focus on dialogue in clinic Manage medications and symptoms All difficult to do while executive function is developing!!

Transitioning from a Diabetes Paediatric Care Setting: Patients Perceptions Young adults reported: Feeling a sense of abandonment by the pediatric team That they would have appreciated written information describing the transition process and details about the new physician Feeling lost in the shuffle as they had not received appointment notifications or reminders from adult centers That it was an abrupt process, which lacked coordination among health care professionals (Scott et al., 2005; Pacaud et al., 1996; Visten et al., 2006)

Transitioning to an Adult Diabetes Care Setting: Patients Perceptions Young adults voiced that: Time constraints identified as main reason for poor attendance at adult clinics More flexible hours and shorter waiting times They would prefer to have longer initial meetings with the adult team or to have had visits prior to their transfer Adult staff should be approachable and understand issues faced by young adults Scott et al., 2005; Pacaud et al., 1996; Visten et al., 2006)

Parents of teens report: Feeling worried that the adult system will not care for their child Feelings of abandonment Reluctant to let go of pediatric system Concerned about their child s level of responsibilty

Pediatric Care Providers report: Worry that teen will drop out of system Fear that teen does not have necessary skills for the adult system Concern re: accessibility to psychosocial support Unsure of their role in the transition process

Adult health care providers report: Youth lack responsibility Frustration Concern Helpless Unsure of their role in the transition process

Differences in Traditional Health Care Models Paediatric Family centered Fewer patients Physically appropriate for children Multi-disciplinary team & supports available Emerging Adult Adult Individually centered Large # of patients Physically appropriate for adults Limited team support Potential for limited exposure to paediatric specific conditions

ISPAD Clinical Practice Consensus Guidelines 2014 Negotiation and liaison between pediatric and adult services e.g. joint adolescent/young adult clinics or identification of key worker ideally a specialist adolescence nurse Decisions should be made about optimal age and stage for transfer depending on local services and agreement Communication and mechanisms should be in place (e.g. written protocol) to facilitate a better understanding between providers The teen should be prepared in advance to avoid drop out from care by Ensuring there is no gap in care between leaving and entering the adult service Transition service should have mechanism in place (database and a named professional to identify and locate all who fail to attend follow-up consultation.

Models of Transitional Care Direct Transfer to an Adult clinic Transition Clinic/Young Adult Clinic Joint clinics or shared care between pediatric and adult providers Use of non-medical case managers to guide youth though the transition (e.g. Maestro Project). ***importance of family physician in bridging the gap.

Examples of Transition Strategies Anticipatory guidance: incorporating developmentally appropriate information and health promoting skills into clinic visits Workshops targeting youth and parents during key transitional periods Developing an individualized transition plan Incentives: e.g. Diabetes Hope Foundation Scholarships. Facilitating first appointment with adult team and/or collaborating with adult colleagues and program graduates

At every clinic visit No matter what, find something positive to say- be genuine Give the teen a chance to set the agenda Spend some time alone with the teen negotiate what information will be shared with parent Avoid asking sensitive questions in parent s presence Ask permission before bombarding with unwanted information Acknowledge how hard it must be Look for opportunities to reduce conflict The message Come back when you are ready doesn t work.

Preventing Dropout from Care: The Toronto Experience

Transition Program Description Integrates: Developmental framework Health promotion planning Philosophy of empowerment Targets: Youth and their parents, Pediatric and adult health professionals Includes multiple strategies - formal and informal

Teen-Specific Discussion Topics Health care and other transitions Importance of follow-up What s different Choices Preparing for success What if it doesn t work Referral process What to expect of the new team Role of parents in diabetes care & follow-up Lifestyle, relationships & health maintenance

Clinical Characteristics at or Prior to Discharge from Sickkids Attenders N= 75 Non-Attenders N = 5 Diabetes Duration Yrs (mean ± SD) 9.2 ± 3.8 9.2 ± 4.1 Mean HbA1c % 0-12 months pre-discharge 13-24 months pre-discharge 8.8 ± 1.5 8.5 ± 1.2 10.9 ± 1.6 * 10.7 ± 1.7 ** Mean Number Clinic Visits 12 months pre-discharge 3.6 ± 1.1 4.4 ± 0.9 Number with a Chronic Complication 2 (3%) 3 (60%) * p <0.002 ** p<0.001

Rate of Follow-Up 2-4 Years After Leaving Pediatric Care at Sick Kids 100% 80% 60% 40% 20% 0% 76% 24% 94% 6% Attenders Non-Attenders 1989 Pre-Transition Program N = 41 2001 Post-Transition Program N = 80

Good 2 Go Program Goals To prepare all youth with chronic health conditions to leave Sick Kids by the age of 18 years with the necessary skills and knowledge to: Advocate for themselves (or through others) Maintain health-promoting behaviors Utilize adult health care services appropriately and successfully

How They Do This Utilizing the Shared Management Model to provide education and staff support Creating resources that programs can modify for patient specific needs Offering direct transition service to high-risk patients Supporting hospital programs/clinics to evaluate outcomes Researching to assess the best way to engage youth in transition skill development

Shared Management Model This approach encourages a shift in knowledge and responsibility from the service provider to the parent and finally to the young person. Age & Time Provider Parent/Family Young Person Major responsibility Support to Parent/family & child/youth Provides care Manages Receives care Participates Consultant Supervisor Manager Resource Consultant Supervisor/CEO (Kieckhefer GM., & Trahms CM, 2000)

Resources Developed

Objectives of the Timeline To enable parents and youth to; Gradually move towards greater ownership of health care as well as other areas of life Understand current and upcoming developmental transitions To support health-care providers to; Utilize a coordinated approach to transition planning founded in the shared management model Collaborate with families and youth to envision appropriate diabetes self management goals

Diabetes Transitional Timeline

Diabetes Timeline Content 16 years and up: Education Category Consider volunteer work or a parttime/summer job Take more responsibility for understanding your diabetes by emailing or phoning your nurse or dietitian for advice Look into applying for a Diabetes Hope Foundation Scholarship if you are planning to go to college/university Attend the Transition Day offered at SickKids to help you prepare for adult care

Conclusions Transition is a process; transfer is a one time event Vulnerable developmental phase -falling out-of-care associated with poor health outcomes Transition preparation is optimal when paediatric and adult health care providers collaborate Identify and reconnect those lost to follow-up Incorporate research into new initiatives

Thank you!