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

Article (PDF Available)inPEDIATRICS 113(3 Pt 1):e197-205 · April 2004with370 Reads
DOI: 10.1542/peds.113.3.e197 · Source: PubMed
Abstract
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.
DOI: 10.1542/peds.113.3.e197
2004;113;e197-e205 Pediatrics
Samuel C. Siu and Gary D. Webb
Graham J. Reid, M. Jane Irvine, Brian W. McCrindle, Renee Sananes, Paul G. Ritvo,
Care Among a Cohort of Young Adults With Complex Congenital Heart Defects
Prevalence and Correlates of Successful Transfer From Pediatric to Adult Health
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Prevalence and Correlates of Successful Transfer From Pediatric to
Adult Health Care Among a Cohort of Young Adults With
Complex Congenital Heart Defects
Graham J. Reid, PhD*‡§¶; M. Jane Irvine, PhD‡#; Brian W. McCrindle, MD**‡‡; Renee Sananes, PhD‡ ‡‡;
Paul G. Ritvo, PhD‡‡‡ §§; Samuel C. Siu, MD§¶; and Gary D. Webb, MD§
ABSTRACT. Objectives. 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 compli-
cations (eg, reoperation and/or arrhythmias) and prema-
ture mortality. The present study aimed to determine the
percent of young adults with CHDs who successfully
transferred from pediatric to adult care and examine cor-
relates of successful transfer.
Design. Cross-sectional study with prevalence data
from an entire cohort.
Setting and Patients. All patients (n 360) aged 19 to
21 years with complex CHDs who, according to current
practice guidelines, should be seen annually at a special-
ized adult CHD center were identified from the database
of the cardiology program at the Hospital for Sick Chil-
dren 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.
Main Outcome Measure. All 15 specialized adult
CHD centers in Canada formed the Canadian Adult Con-
genital 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. At-
tendance at a CACH center provides a clear criterion for
successful transfer.
Results. In the total cohort, 47% (95% confidence in-
terval [CI]: 42–52) had transferred successfully to adult
care. There was no difference in rates of successful trans-
fer between patients consenting to complete question-
naires (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:
1.404.37), 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 sig-
nificantly 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 sib-
lings (OR: 6.59; 95% CI: 1.61–27.00) also correlated with
successful transfer.
Conclusions. This is the first study to document the
percent of young adults with a chronic illness who suc-
cessfully transfer to adult care in a timely manner. Pa-
tients 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 edu-
cated 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 set-
ting, and patients must acquire appropriate beliefs about
adult care well before transfer. Developmentally appro-
priate, staged discussions involving the patient, with and
without parents, throughout adolescence may help pa-
tients 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 de-
spite 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
From *Department of Psychology and Family Medicine, University of West-
ern Ontario, London, Ontario, Canada; ‡Department of Public Health Sci-
ence, University of Toronto, Toronto, Ontario, Canada; §Department of
Medicine, University of Toronto, Toronto, Ontario, Canada; University
Health Network, Toronto, Ontario, Canada; **Department of Pediatrics,
University of Toronto, Toronto, Ontario, Canada; #Department of Psychol-
ogy, York University, Toronto, Ontario, Canada; ‡‡Hospital for Sick Chil-
dren, Toronto, Ontario, Canada; §§School of Kinesiology and Health Sci-
ences, York University, Toronto, Ontario, Canada; and ¶Toronto Congenital
Cardiac Centre for Adults, Toronto, Ontario, Canada.
Received for publication May 20, 2003; accepted Oct 24, 2003.
Portions of this manuscript were presented at the annual meeting of the
Canadian Cardiovascular Society, Quebec, QC, Canada, October 19–23,
1999 and the 3rd World Congress of Pediatric Cardiology and Cardiac
Surgery, Toronto, ON, Canada, May 27–31, 2001.
Address correspondence to Graham J. Reid, PhD, University of Western
Ontario, SSC 7310, London, ON, Canada N6A 5C2. E-mail:greid@uwo.ca
PEDIATRICS (ISSN 0031 4005). Copyright © 2004 by the American Acad-
emy of Pediatrics.
http://www.pediatrics.org/cgi/content/full/113/3/e197 PEDIATRICS Vol. 113 No. 3 March 2004 e197
by on August 22, 2009 www.pediatrics.orgDownloaded from
and transition clinics are needed. Similarly, patients en-
gaging 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 de-
pend on our ability to make these changes. Pediatrics
2004;113:e197e205. URL: http://www.pediatrics.org/cgi/
content/full/113/3/e197; congenital heart defects, transi-
tion, transfer, continuity of care, adolescent, young adult.
ABBREVIATIONS. CHD, congenital heart defect; CACH, Cana-
dian Adult Congenital Heart; HSC, Hospital for Sick Children;
TCCCA, Toronto Congenital Cardiac Center for Adults; CI, con-
fidence interval; OR, odds ratio.
M
ore than 85% of children born today with
chronic medical conditions will live to
adulthood.
1
Annually, 500 000 adoles-
cents with chronic medical conditions in the United
States and 50 000 in Canada should transfer from
pediatric to adult care.
2,3
Transition has been defined
as the purposeful, planned movement of adoles-
cents and young adults with chronic physical and
medical conditions from child-centered to adult-ori-
ented health-care systems(p 570)
4
; it addresses both
physical and psychosocial factors.
1
The need for
proper transition or transfer (ie, a change in the
location where care is provided
5
) is recommended
for many chronic conditions (eg, diabetes, cystic fi-
brosis, and arthritis
6
) and highlighted in a recent
consensus statement.
2
Transition is discussed fre-
quently (eg, refs 712) but studied rarely (eg, refs 1
and 1317). In Canada, government funding of
health care typically requires individuals 18 years
old to be seen in an adult hospital, although variation
by center and provinces may result in transfer after
16 years old. In the United States, the age of transfer
to adult care varies due to the diversity of health care
coverage. An age of 18 years or the end of high
school has been recommended as a typical age for
transfer to adult care.
8,18
The importance of transition was raised in all 5
task-force reports from the recent Bethesda Confer-
ence on the Care of the Adult With Congenital Heart
Disease.
1822
There are close to 100 000 adults with
congenital heart defects (CHDs) living in Canada
and 1 million in the United States.
19,23
Current guide-
lines 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,
19,21,2426
because these individuals are
at risk for serious complications (eg, reoperation,
27,28
arrhythmias
29,30
, and premature mortality
29
). Al-
though discussed in numerous publications (eg, refs
3133), only Kools et al,
34
who interviewed 8 patients
regarding experiences in adult hospitals, obtained
data from patients with CHDs.
The first objective of the present