Prevalence and Correlates of Successful Transfer From Pediatric to Adult Health Care Among a Cohort of Young Adults With Complex Congenital Heart Defects

Department of Paediatrics, University of Toronto, Toronto, Ontario, Canada
PEDIATRICS (Impact Factor: 5.47). 04/2004; 113(3 Pt 1):e197-205. DOI: 10.1542/peds.113.3.e197
Source: PubMed


More than 85% of children born today with chronic medical conditions will live to adulthood, and many should transfer from pediatric to adult health care. The numbers of adults with congenital heart defects (CHDs) are increasing rapidly. Current guidelines recommend that just over half of adult CHD patients should be seen every 12 to 24 months by a cardiologist with specific CHD expertise at a regional CHD center, because they are at risk for serious complications (eg, reoperation and/or arrhythmias) and premature mortality. The present study aimed to determine the percent of young adults with CHDs who successfully transferred from pediatric to adult care and examine correlates of successful transfer.
Cross-sectional study with prevalence data from an entire cohort.
All patients (n = 360) aged 19 to 21 years with complex CHDs who, according to current practice guidelines, should be seen annually at a specialized adult CHD center were identified from the database of the cardiology program at the Hospital for Sick Children in Toronto, Canada, a pediatric tertiary care center. Of these patients, 234 completed measures about health beliefs, health behaviors, and medical care since age 18 years.
All 15 specialized adult CHD centers in Canada formed the Canadian Adult Congenital Heart (CACH) Network. Attendance for at least 1 follow-up appointment at a CACH center before the age of 22 years was ascertained for all eligible patients. Attendance at a CACH center provides a clear criterion for successful transfer.
In the total cohort, 47% (95% confidence interval [CI]: 42-52) had transferred successfully to adult care. There was no difference in rates of successful transfer between patients consenting to complete questionnaires (48%) and those who declined (47%). More than one quarter (27%) of the patients reported having had no cardiac appointments since 18 years. In multivariate analyses of the entire cohort, successful transfer was significantly associated with more pediatric cardiovascular surgeries (odds ratio [OR]: 2.47; 95% CI: 1.40-4.37), older age at last visit to the Hospital for Sick Children (OR: 1.29; 95% CI: 1.10-1.51), and documented recommendations in the medical chart for follow-up at a CACH center. In multivariate analyses of the patients completing questionnaires, successful transfer was significantly related to documented recommendations and patient beliefs that adult CHD care should be at a CACH center (OR: 3.64; 95% CI: 1.34-9.90). Comorbid conditions (OR: 3.13; 95% CI: 1.13-8.67), not using substances (eg, binge drinking; OR: 0.18; 95% CI: 0.07-0.50), using dental antibiotic prophylaxis (OR: 4.23; 95% CI: 1.48-12.06), and attending cardiac appointments without parents or siblings (OR: 6.59; 95% CI: 1.61-27.00) also correlated with successful transfer.
This is the first study to document the percent of young adults with a chronic illness who successfully transfer to adult care in a timely manner. Patients were from an entire birth cohort from the largest pediatric cardiac center in Canada, and outcome data were obtained on all eligible patients. Similar data should be obtained for other chronic illnesses. There is need for considerable improvement in the numbers of young adults with CHDs who successfully transfer to adult care. At-risk adolescents with CHDs should begin the transition process before their teens, should be educated in the importance of antibiotic prophylaxis, should be contacted if a follow-up appointment is missed, and should be directed to a specific CHD cardiologist or program, with the planned timing being stated explicitly. Adult care needs to be discussed in the pediatric setting, and patients must acquire appropriate beliefs about adult care well before transfer. Developmentally appropriate, staged discussions involving the patient, with and without parents, throughout adolescence may help patients acquire these beliefs and an understanding of the need for ongoing care. Improved continuity of pediatric care and provision of clear details for adult follow-up might be sufficient to cause substantive improvements in successful transfer. An understanding of why patients drop out of pediatric care may be needed to improve the continuity of care throughout adolescence. Almost one quarter of the patients believed adult care should be somewhere other than at a CACH center despite opposite recommendations. For these patients, a single discussion of adult care during the final pediatric visit may be too little, too late. In addition to earlier discussions, multiple mechanisms such as referral letters and transition clinics are needed. Similarly, patients engaging in multiple risky or poor health behaviors such as substance use may need more intensive programs to make substantial changes in these behaviors, which hopefully would lead to successful transfer. Overall, these data support the view that transition to adult care (a planned process of discussing and preparing for transfer to an adult health center) is important and should begin well before patients are transferred. The future health of adults with chronic conditions may depend on our ability to make these changes.


Available from: Jane Irvine
  • Source
    • "They are frequently lost to followup during adolescence and early adulthood, for several reasons, including inadequate ISRN Cardiology understanding by patients and parents of the importance of life-long medical care [11] and challenges to transition from adolescent to adult care [12] [13]. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Adults with congenital heart disease (ACHD) face noncardiac healthcare challenges as the population ages. We assessed whether women with ACHD have comparable cancer screening rates to non-ACHD women in a cardiac practice and to the general population. We performed a retrospective review of 175 adult women seen in a cardiac care center in 2009-2011. Data on Pap tests, mammography, and colonoscopies, were collected through electronic medical records and primary care provider records. Adequate documentation was available for 100 individuals with ACHD and 40 comparator cardiac patients. The adequacy of screening was determined using guidelines set forth by the American Cancer Society in 2010. Compared with the national average, ACHD patients had significantly lower rates of Pap tests (60% versus 83%, P < 0.001) and mammography (48% versus 72%, P < 0.001). Compared with non-ACHD women in the same practice, ACHD patients had consistently lower rates of mammography (48% versus 81%, P = 0.02) and colonoscopies (54% versus 82%, P = 0.23). As the population of ACHD individuals ages, attention to cancer screening becomes increasingly important but may be overlooked in this population. Primary care physicians and cardiologists should collaborate to ensure appropriate cancer screening for this growing population.
    08/2013; 2013:827696. DOI:10.1155/2013/827696
  • Source
    • "Because the move to adult healthcare represents a critical stage in the life course of young adults, suboptimal transition experiences may not only impede access to needed medical care but may also undermine education and/or vocational training, severely limiting opportunities for a successful and productive adulthood (Halfon & Hochstein, 2002). The process of preparing youth for the move to adult care has been studied in diverse patient populations, including cystic fibrosis (Anderson, Flume, Hardy, & Gray, 2002; Brumfield & Lansbury, 2004; Flume, Anderson, Hardy, & Gray, 2001; Flume, Taylor, Anderson, Gray, & Turner, 2004; McLaughlin et al., 2008), congenital heart disease (Knauth, Verstappen, Reiss, & Webb, 2006; Lyon, Kuehl, & McCarter, 2006; Reid et al., 2004), diabetes (Van Walleghem, Macdonald, & Dean, 2008), asthma (Houtrow & Newacheck, 2008), HIV (Wiener, Zobel, Battles, & Ryder, 2007), mental health conditions (Marcer, Finlay, & Baverstock, 2008; Singh, Paul, Ford, Kramer, & Weaver, 2008), and neuromuscular disease (Binks, Barden, Burke, & Young, 2007). There is consensus that successful transition requires that youth acquire skills in the areas of self-care, healthcare decision-making, and self-advocacy that will prepare them to ''take more responsibility for their health and health care'' (Institute of Medicine, 2007). "
    [Show abstract] [Hide abstract]
    ABSTRACT: The aim of this study was to develop the Transition Readiness Assessment Questionnaire (TRAQ), a measure of readiness for transition from pediatric to adult healthcare for youth with special health care needs (YSHCN). We administered TRAQ to 192 YSHCN aged 16-26 years in three primary diagnostic categories, conducted factor analysis, and assessed differences in TRAQ scores by age, gender, race, and primary diagnosis type. Factor analysis identified two TRAQ domains with high internal consistency: Skills for Self-Management and Skills for Self-Advocacy. Each domain had high internal consistency. In multivariate regression models, older age and a primary diagnosis of an activity limiting physical condition were associated with higher scores in Self-Management, and female gender and a primary diagnosis of an activity limiting physical condition were associated with higher scores in Self-Advocacy. Our initial validation study suggests the TRAQ is a useful tool to assess transition readiness in YSHCN and to guide educational interventions by providers to support transition.
    Journal of Pediatric Psychology 03/2011; 36(2):160-71. DOI:10.1093/jpepsy/jsp128 · 2.91 Impact Factor
  • Source
    • "Referral to other specialists such as psychiatrists (Bassett et al., 2005) and experts in substance abuse (especially since has been linked to unsuccessful transitioning from pediatric to adult care; Reid et al., 2004) could be necessary in particular cases. "
    [Show abstract] [Hide abstract]
    ABSTRACT: When it comes to the role of the clinical psychology in the cardiac settings, or psychocardiology, there is often a focus on acquired cardiac illnesses in the rehabilitation settings. However, the increase of adults with congenital heart disease due to technological advances in cardiology and cardiac surgery have created a new emergency. It is thus necessary to reflect upon the elements of psychocardiology adapting them to this new population, also when it comes to interventional hospital settings of cardiology and cardiac surgery. This perspective article is an effort in this direction.
    Frontiers in Psychology 08/2010; 1:34. DOI:10.3389/fpsyg.2010.00034 · 2.80 Impact Factor
Show more

Similar Publications