Objectives Optimizing the Transition from the Pediatric to the Adult CHD Clinic Andrew Mackie, MD, SM Departments of Pediatrics and Public Health Sciences Stollery Children s Hospital University of Alberta March 11, 2011 No disclosures Understand what transition is and why it s important To take home some practical ideas for facilitating the transition and transfer of adolescents to adult care Definitions Caveat Outline Transition: the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from childcentered to adult-oriented health care systems Blum et al. J Adolesc Health, 2004 Transition is a process, not an event Transfer: is an event Patient move from pediatric to adult 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 Transition: Scope of the problem Overcoming the problem What we know What we don t know Practical suggestions for improving transitional care 1
Prevalence of Complex CHD CHD Survival Emerging survivor population Moons et al. Circulation 2010 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 Marelli AJ et al. Circulation 2007 Warnes CA JACC 2001 Loss to follow-up in CHD Loss to follow-up in CHD Loss to follow-up during childhood Only 47% of 19-21 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 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 Mackie AS et al. Circulation 2009 2
Lesion-specific loss to follow-up Loss to follow-up: Consequences Interventions after a lapse in care Mackie AS et al. Circulation 2009 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 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 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. But what are we actually doing to facilitate transition? Survey of North American and European centers (69 responded, rate 30%) 74% transfer patients to adult-focused care 59% transferred to an ACHD program Factors influencing transfer Patients having adult co-morbidities Patients considering pregnancy Teen or parent requests to leave pediatrics Hilderson D et al. Ped Cardiol 2009 Transition practices Only 22% of centers had a formal transition program 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 3
Summary: Scope of the Problem Outline What we don t know < 50% of youth transition to an ACHD program A lapse in care increases likelihood of cardiac re-intervention Adolescents feel anxious and ill-prepared Parents express difficulty relinquishing care Only a small minority of pediatric centers offer transition programs 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. What endpoints/ outcomes should we be evaluating? How does one measure transition readiness? Measuring transition readiness Transition Readiness Assessment Questionnaire (TRAQ) 29-items, using Likert scale Two domains: Self-management, Self-advocacy Single publication: 192 subjects age 16-26 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 Measuring transition readiness 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 et al. Int J Child Adol Health 2011 4
Self-management skills assessment guide Williams et al. Int J Child Adol Health 2011 Interventions: What we know 1. 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 2. Access to a healthcare navigator for adolescents and young adults was well received in a diabetes population (79% participation) improved follow-up among young adults, compared to historical controls Van Walleghem Diabetes Care 2008 Interventions: What we know Interventions: What we know Outline 3. The Internet probably helps Youth (n=19) with diabetes Website providing -Diabetes education, discussion board, etc. Website accessed 4445 times (6 months) 2256 messages on discussion board Heavy involvement of diabetes educator Gerber Diab Tech Therap 2007 4. Structured, coordinated program of transitional care improves teen and parent satisfaction with overall care 308 teens with juvenile arthritis and their parents 10 rheumatology centers in U.K. Mind the Gap scale Shaw Rheumatology 2004 Transition: Scope of the problem Overcoming the problem What we know What we don t know Practical suggestions for improving transitional care 5
Cornerstones of transitional care Cornerstones of transitional care 1. Facilitate education Understanding of their heart Potential complications Endocarditis prophylaxis Contraception and pregnancy Purpose of medications Noncardiac surgery Vocational and insurance planning 2. Promote increasing self-management Assertiveness training Self-care Communication skills 3. Support parents Practical suggestions (1) Practical suggestions (2) Practical suggestions (3) Start early in adolescence Speak to adolescents on their own Discuss transition and what that means Discuss confidentiality Develop an educational curriculum Role play a doctor- patient interaction Provide a portable medical summary MyHealth passport ACC passport Adult team: continue educational and self-management interventions once pt transferred to ACHD clinic Knauth Meadows at al. Current Cardiol Reports 2009 Become familiar with transition resources, e.g. websites Identify local resources required to establish a transition program Personnel, time, space, $$ Meet with administration advocate Knauth Meadows at al. Current Cardiol Reports 2009 6
Practical suggestions (4) Practical suggestions (5) Conclusions (1) Build bridges between pediatric and adult providers Consider joint pediatric-adult clinics Consider transition events Graduation events At CHD summer camps Evaluate and refine your interventions Be flexible with age at transfer Ideally transfer during period of health stability Don t rely on patients to make first ACHD appointment Have plenty of contact info, should patient not appear in ACHD clinic All relevant medical records to travel ahead of patients, including a thorough summary 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 3. Loss to follow-up is very prevalent 4. Loss to follow-up predisposes to need for re-intervention Conclusions (2) References (1) References (2) 5. No well-established tools exist for assessing transition readiness or self-management skills in the CHD or PAH populations Further evaluation is pending 6. Multidisciplinary approach is required 7. Rigorous evaluation of transition interventions is urgently needed Review articles: Knauth Meadows et al. - Current Cardiol Reports 2009;11:291-297 Saidi, Kovacs - Congenit Heart Dis 2009;4:204-15 Transition readiness assessment tools: TRAQ - Sawicki J Ped Psychol Dec 2009 Self-management skills assessment guide - Williams Int J Child Adol Health 2011 MyHealth passport: http://www.sickkids.on.ca/myhealthpassport/ ACC ACHD passport: www.cardiosource.org (search passport ) Some excellent websites: SickKids (Toronto): www.sickkids.ca/good2go/ Univ. of Florida: www.hctransitions.ichp.ufl.edu/ Royal Children s Hosp.: www.rch.org.au/transition 7
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