Optimizing the Transition from the Pediatric to the Adult CHD Clinic. Caveat. Outline. CHD Survival. Prevalence of Severe CHD

Transcription

1 Optimizing the Transition from the Pediatric to the Adult CHD Clinic No disclosures Andrew Mackie, MD, SM Departments of Pediatrics and Public Health Sciences Stollery Children s s Hospital University of Alberta March 11, 2011 Outline Caveat Transition: Scope of the problem Overcoming the problem What we know What we don t know Practical suggestions for improving transitional care Literature on health care transition and the pulmonary vascular disease population appears to be limited a single publication Fraisse A. Press Med 2009 This talk focuses on congenital heart disease Prevalence of Severe CHD CHD Survival Moons et al. Circulation 2010 Marelli AJ et al. Circulation 2007

2 Emerging survival population Loss to follow-up in CHD Complex health needs Cardiac morbidity Cardiac death in early-mid adulthood Mental health challenges High rate of health care resource utilization Moderate- complex CHD life-long follow-up in specialized ACHD centers Warnes CA JACC 2001 Only 47% of year olds with complex CHD were seen at a Canadian ACHD centre within 3 years of graduating from SickKids Reid GJ et al. Pediatrics 2004 Predictors of ACHD attendance were: cardiac surgical procedures in childhood older age at last pediatric visit documentation in chart of need for follow-up Loss to follow-up in CHD Among a subset (n=234) who completed questionnaires, predictors of ACHD attendance were: Co-morbid conditions Not using substances Using dental prophylaxis Attending cardiac appointments without parent or siblings Documentation in chart of need for follow-up Reid GJ et al. Pediatrics 2004 Loss to follow-up during childhood Mackie AS et al. Circulation 2009 Lesion-specific loss to follow-up Mackie AS et al. Circulation 2009 Loss to follow-up during childhood: Risk factors Quebec data Male gender Simple CHD lesion Prior cardiology care outside university hospital setting (satellite/outreach clinics) Mackie AS et al. Circulation 2009 Edmonton data (impending peer review) No documentation in chart of need for follow-up Previously missed appointments Lower family income No cath within past 5 years

3 Loss to follow-up: Consequences Colorado: Among 158 adults with moderate-complex CHD, 99 (63%) had a lapse in care of > 2 years since leaving pediatric center Most common cited reason: patient had been told there was no need for follow-up (32%) Those with lapse of care more likely to require surgical or catheter intervention within 6 months (OR 3.1, p-value 0.003) Yeung et al. Int J Cardiol 2008 Interventions following lapse in care Pulmonary valve replacement 23 Coarctation intervention 16 LVOT intervention 10 VSD closure 5 Pacemaker/AICD placement 5 Tricuspid valve surgery 5 Mitral valve surgery 4 PDA closure 4 Fontan with MAZE 3 Yeung et al. Int J Cardiol 2008 Co-existing challenges Guidelines Anxiety related to transfer of care Adolescents and young adults Parents Lack of knowledge about their heart Adolescents and young adults Sense of being cured Other life transitions College ± employment, relocations, romantic relationships, risk-taking behaviours, etc. ACHD American Circulation 2008 Canadian Can J Cardiol 2010 European Pediatrics American Academy of Pediatrics Society for Adolescent Medicine Canadian Pediatric Society European Heart Journal 2010 Pediatrics 2002 J Adol Health 2003 Paediatr Child Health 2007 But what are we actually doing to facilitate transtion? Survey of North American and European centers (69 responded, rate 30%) 74% transfer patients to adult-focused care - of these, 80% send to a formal ACHD program Factors influencing transfer Patients having adult co-morbidities Patients considering pregnancy Teen or parent requests to leave pediatric cardiology Hilderson D et al. Ped Cardiol 2009 Transition practices Most common practices: Education about heart disease and treatments Explanation of the rationale for transfer Education about health behaviors Hilderson D et al. Ped Cardiol 2009

4 Summary: Scope of the Problem Fewer than ½ transition to an ACHD program Reid Pediatrics 2004 Failure to attend ACHD clinic results in excess cardiac morbidity Yeung Int J Cardiol 2008 Parents express great difficulty relinquishing care Rempel Can J Cardiol 2009 Only 22% of pediatric programs offer transition programs to adolescents to facilitate transition Hilderson Pediatr Cardiol 2009 Definitions Transition: the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered centered to adult- oriented health care systems Blum et al. J Adolesc Health, 2004 Transition is a process, not an event Transfer: is an event sending the adolescent to adult care Outline What we don t know Transition: Scope of the problem Overcoming the problem What we know What we don t know Practical suggestions for improving transitional care Do interventions to facilitate transition and transfer actually work? transition clinics, graduation events, etc. How should we measure transition readiness? What other outcomes are appropriate? Measuring transition readiness Transition Readiness Assessment Questionnaire (TRAQ) 29-items, using Likert scale Two domains: Self-management, Self-advocacy Single publication: 192 subjects age years, variety of health conditions Scores (range 0-5) increase with age in both domains Sawicki G et al. J Pediatr Psychol 2009 Transition readiness assessment questionnaire (TRAQ) Sawicki G et al. J Pediatr Psychol 2009

5 Measuring transition readiness Interventions: What we know Self-management skills assessment guide 21 items, using Likert scale Some overlap with TRAQ scale Good face validity Single publication: 49 youth age 11-18, 2/3 rds having CNS conditions Good correlation between teen and parent scores Williams Int J Child Adol Health Portable health summaries are well received by teens Web-based MyHealth passport : Survey of 224 youth and adults with special health care needs - 74%: easy to use - 77%: helped me learn about my condition - 83%: made it easier to receive care - 91%: would recommend to others Wolfstadt Int J Child Adol Health 2011 Interventions: What we know Interventions: What we know 2. Access to a healthcare navigator for adolescents and young adults is well received improves follow-up among young adults with diabetes, compared to historical controls Van Walleghem Diabetes Care Individualized transition program improves teen and parent satisfaction with service delivery (teens with Juvenile arthritis) Shaw Rheumatology 2004 Outline Practical suggestions (1) Transition: Scope of the problem Overcoming the problem What we know What we don t know Practical suggestions for improving transitional care Become familiar with transition resources, e.g. websites Educate colleagues Identify local resources required to establish a transition program Personnel, time, space, $$ Meet with administration advocacy Knauth Meadows at al. Current Cardiol Reports 2009

6 Practical suggestions (2) Practical suggestions (3) Speak to adolescents on their own Discuss transition and what that means Develop an educational curriculum Provide a portable medical summary ACC passport MyHealth passport Knauth Meadows et al. Current Cardiol Reports 2009 Build bridges between pediatric and adult providers Consider joint pediatric-adult clinics Consider transition events At summer camps Graduation events Evaluate and refine your interventions Knauth Meadows et al. Current Cardiol Reports 2009 Practical suggestions (4) Conclusions (1) Coordinate transfer of care Provide adolescent with specific appointment date, time, location, MD name All relevant documents to go to ACHD team 1. Adolescents living with CHD identify the need for transition programming 2. Adolescents (and young adults) have poor knowledge about their condition and the need for follow-up Knauth Meadows et al. Current Cardiol Reports Loss to follow-up is very prevalent 4. Lapses in care predispose to need for reintervention Conclusions (2) References (1) 5. No well-established tools exist for assessing transition readiness or self-management skills in the CHD or PAH populations Further evaluation pending 6. Multidisciplinary approach to transitional care is required 7. Rigorous evaluation of transition interventions is urgently needed Review articles: A. Knauth Meadows Current Cardiol Reports 2009;11: A. Saidi Congenit Heart Dis 2009;4: Transition readiness assessment tools: G.S. Sawicki J Ped Psychol Dec 2009 T. S. Williams Int J Child Adol Health 2011

7 References (2) MyHealth passport: ACC ACHD passport: (search passport ) Some excellent websites: SickKids (Toronto): Univ. of Florida: Royal Children s Hosp.: