CARDIOVASCULAR JOURNAL OF AFRICA • Vol 24, No 1, January/February 2013
AFRICA
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Conclusion
: Living with a Fontan circulation included negative
experiences but the analyses clearly demonstrated a feeling of being
strong and healthy. An appreciation of having survived and being
committed to life was found to be part in the development of the
interviewees’ existential growth. This probably strengthens them
further in their ability to balance expectations and hurdles in life.
1110: TECHNOLOGY AND TEENAGERS - DEVELOPING A
MOBILE PHONE APP FOR TRANSITIONAL CARE
Angie Johnson, Debbie McParlin, Dawn Goodfellow
Freeman Hospital, Newcastle-upon-Tyne Hospitals NHS Foundation
Trust, UK
Background:
Children are now surviving into adult life with condi-
tions which were previously fatal in childhood. These young people
often require complex interventions from numerous members of the
multidisciplinary team and there is an obligation to ensure that their
health care needs are met as they move into adulthood. The National
Service Framework for Children, Young People and Maternity servic-
es have highlighted transitional care as an integral component for all
young people including those with chronic illness and/or disability.
Transition is further supported by the intercollegiate report ‘Bridging
the Gaps: Health Care for Adolescents’, guidelines from the Royal
College of Nursing, ‘You’re Welcome’ standards for adolescent-
friendly services. There is now an evolving evidence base for devel-
opment in this area and the unmet transitional care needs of young
people are well documented. There is an emphasis on increasing the
knowledge of young adolescents about their condition, treatment and
the personnel concerned with their care. Previously paper records had
been given to young people; however the clinic nurses identified that
young people did not return to clinic with these.
Method:
In discussion with young people in transition and those in
the adult clinic who had recently transitioned, it was identified that a
phone app for use by patients as a health passport would be beneficial
to the young people during a difficult time.
Results/conclusion:
Phase 1 was the development of the app and
initial trial involving young people at all stages. Phase 2 will happen
later in the year as we build on the initial design, modify the app and
roll out to all. We believe that technology is the way to engage young
people in their own care and that this design can be shared with
colleagues in other centres and across other specialties.
1135: PSYCHOSOCIAL MATURITY, QUALITY OF LIFE,
AND PARENTAL FOSTERING OF AUTONOMY AMONG
YOUNG ADULTS WITH CONGENITAL HEART DISEASE
Andrew Mackie
1,2
, Kathryn Rankin
2
, Cheri Robert
2
, Gwen Rempel
3
,
Joyce Magill-Evans
4
, David Nicholas
5
, Adrienne Kovacs
6
1
Stollery Children’s Hospital, Edmonton, Alberta, Canada
2
Department of Pediatrics, University of Alberta, Canada
3
Faculty of Nursing, University of Alberta, Canada
4
Faculty of Rehabilitation Medicine, University of Alberta, Canada
5
Division of Social Work, University of Calgary, Canada
6
Peter Munk Cardiac Centre, University Health Network, Toronto,
Canada
Background
: Congenital heart disease (CHD) may impose psycho-
social challenges for youth and their parents, especially during the
transition to adult health services. We compared psychosocial matu-
rity, quality of life, perceived health status, and parental fostering
of autonomy among young adults with CHD of moderate vs great
complexity, and between those followed in a paediatric vs adult clinic.
Methods
: Cross-sectional study of 18–25-year-olds with CHD of
moderate or great complexity managed in Edmonton or Toronto,
Canada. Subjects completed the Satisfaction with Life Scale (SWLS),
Short Form12 health status survey (SF-12), EriksonPsychosocial Stage
Inventory (EPSI), and Kenny’s Parental Attachment Questionnaire
(PAQ, a measure of parental fostering of child autonomy). Student
t tests and Pearson’s product-moment correlations were performed.
Results
: A total of 164 subjects participated, 106 (65%) with
moderate and 58 (35%) with complex CHD; 71 subjects (43%)
were female. Mean age was 21.4
±
2.4 vs 21.9
±
2.3 years among
those followed in a paediatric vs adult setting, respectively (
p
=
0.29). Mean SWLS score was 27.2
±
5.4 among patients (pts) with
moderate CHD, compared with 25.8
±
6.7 among pts with complex
CHD (
p
=
0.17). SF-12, EPSI, and PAQ scores also did not differ
by defect complexity. Pts followed by a paediatric cardiologist had
more favourable PAQ scores compared to those followed by an adult
cardiologist (55.7
±
10.9 vs 50.9
±
12.3,
p
=
0.02). Within the total
sample, SF-12 mental component summary scores correlated moder-
ately with SWLS scores (
r
=
0.52,
p
<
0.0001).
Conclusions
: Somewhat unexpectedly, young adults followed in
the paediatric setting reported higher parental fostering of their
autonomy than those followed in the adult setting. Survey scores did
not significantly differ between patients with defects of moderate vs
great complexity. These results suggest that defect complexity should
not be a focus when considering the transition needs of young adults
with CHD.
1136: PREPARINGYOUTH FORTRANSITION FROM PAEDI-
ATRIC TO ADULT CONGENITAL HEART PROGRAMMES:
AN INTERVENTION PROTOCOL FROM EDMONTON,
CANADA
Michelle Schuh
1
, Gwen Rempel
2
, Ross Ballantyne
2
, Sandra Caligiuri
1
,
Kathryn Rankin
3
, Cheri Robert
3
, Joyce Magill-Evans
4
, Andrew
Mackie
1,2
1
Stollery Children’s Hospital, Edmonton, Canada
2
Faculty of Nursing, University of Alberta, Canada
3
Department of Pediatrics, University of Alberta, Canada
4
Faculty of Rehabilitation Medicine, University of Alberta, Canada
Background:
Many adolescents living with CHD have limited knowl-
edge of their cardiac lesion or prior interventions, impairing their
potential to transition successfully from child-centred to adult-oriented
care. Although transition programmes have been introduced by some
centres, there are no outcome data with respect to CHD transition.
Methods:
A 1-hour nurse-led one-on-one clinic-based intervention
preparing 15–17-year-olds with moderate or complex CHD was
developed in Edmonton, Canada and tested on 24 subjects. The
aim of the intervention was to improve the knowledge level of the
adolescent regarding their CHD. The intervention protocol included
a) review of a diagram depicting the subject’s cardiac anatomy and
prior surgical or catheter interventions; b) review of potential late
cardiac complications; c) name, dose and rationale for the subject’s
cardiac medications; and d) creation of a portable health summary
(MyHealth passport). The intervention was conducted the same day
as the teen’s cardiology appointment in most cases. Email or texting
(teen choice) was employed by the nurse as a follow-up in the week
after the intervention. Intervention effectiveness was evaluated
through a CHD knowledge questionnaire (MyHeart score) adminis-
tered pre intervention and 1 month post intervention.
Results:
The intervention lasted 67.8
±
17.9 minutes. The nurse
was able to complete the intervention with every subject. The nurse
reached 17 of the 24 teens for a follow-up contact; 13 by texting, 4
by email and 0 by phone. Mean MyHeart score improved from 70.5
±
16.5% correct responses pre-intervention to 79.3
±
13.3% correct
responses 1 month post intervention (
p
=
0.003).
Conclusion:
This transition intervention was feasible in the outpa-
tient setting. A modest improvement in CHD knowledge was
demonstrated 1 month post intervention. Further study is required to
demonstrate the impact of transition interventions on self-manage-
ment skills among adolescents with CHD. A two-stage, multicentre
intervention is being planned by our group.
1186: SELF-REPORTED PHYSICAL FUNCTIONINGMAY BE
MISLEADING IN PREDICTINGACTUAL EXERCISE CAPAC-
ITY INADULTS WITH CONGENITAL HEART DISEASE
