Educational needs of adolescents with congenital heart disease: Impact of a transition intervention programme.
BACKGROUND
Adolescents and young adults with congenital heart disease (CHD) have complex health needs and require lifelong follow-up. Interventions to facilitate the paediatric-to-adult healthcare transition are recommended, but outcomes remain largely under-investigated.


OBJECTIVE
To identify the educational needs and the impact of a transition intervention on knowledge and self-management skills in adolescents and young adults with CHD.


METHODS
From September 2014 to May 2015, 115 adolescents and young adults with CHD (mean age 17±2 years; 47 girls) were consecutively enrolled. Among these, 22 had participated in a structured educational programme in the previous 11±4 months (education group) and 93 had not (comparison group). Knowledge about their health status was assessed using a targeted CHD questionnaire.


RESULTS
The mean overall health knowledge score (maximum of 20) in the education group was significantly higher than in the comparison group (11.7±3.5 vs. 8.6±3.2; P<0.001). We observed significant gaps in knowledge in the comparison group: e.g. 61.3% vs. 90.0% knew their condition name (P=0.01), 21.5% vs. 63.6% were aware of recommended follow-up (P=0.004), and 12.8% vs. 75.0% of girls knew to check their heart condition before pregnancy (P<0.01). In multivariable analysis, after adjustment for age, structured CHD education and higher academic attainment were significant determinants of health-related knowledge (P<0.01).


CONCLUSIONS
Education during adolescent-to-adult transition has a significant impact on health knowledge. Structured CHD educational programmes could improve understanding and prevent potential future complications.
M3C-Unité Médico-Chirugicale de Cardiologie Pédiatrique, Hôpital Necker-Enfants malades, AP-HP, Paris, France; Université Paris Descartes, Sorbonne Paris Cité, Paris, France. Electronic address: magalie.ladouceur@aphp.fr.
Magalie
M
Ladouceur
Harvard Medical School, Department of Psychiatry, Boston Children's Hospital, Boston, USA.
Johanna
J
Calderon
M3C-Unité Médico-Chirugicale de Cardiologie Pédiatrique, Hôpital Necker-Enfants malades, AP-HP, Paris, France; Université Paris Descartes, Sorbonne Paris Cité, Paris, France.
Maladon
M
Traore
M3C-Unité Médico-Chirugicale de Cardiologie Pédiatrique, Hôpital Necker-Enfants malades, AP-HP, Paris, France; Université Paris Descartes, Sorbonne Paris Cité, Paris, France.
Radhia
R
Cheurfi
M3C-Unité Médico-Chirugicale de Cardiologie Pédiatrique, Hôpital Necker-Enfants malades, AP-HP, Paris, France; Université Paris Descartes, Sorbonne Paris Cité, Paris, France.
Christine
C
Pagnon
M3C-Unité Médico-Chirugicale de Cardiologie Pédiatrique, Hôpital Necker-Enfants malades, AP-HP, Paris, France; Université Paris Descartes, Sorbonne Paris Cité, Paris, France.
Diala
D
Khraiche
M3C-Unité Médico-Chirugicale de Cardiologie Pédiatrique, Hôpital Necker-Enfants malades, AP-HP, Paris, France; Université Paris Descartes, Sorbonne Paris Cité, Paris, France.
Fanny
F
Bajolle
M3C-Unité Médico-Chirugicale de Cardiologie Pédiatrique, Hôpital Necker-Enfants malades, AP-HP, Paris, France; Université Paris Descartes, Sorbonne Paris Cité, Paris, France.
Damien
D
Bonnet
D000293:Adolescent; D000294:Adolescent Behavior; D001364:Awareness; D016009:Chi-Square Distribution; D003430:Cross-Sectional Studies; D005260:Female; D015438:Health Behavior; D007722:Health Knowledge, Attitudes, Practice; D006301:Health Services Needs and Demand; D006304:Health Status; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000503:physiopathology / Q000523:psychology / Q000628:therapy*; D006801:Humans; D008297:Male; D015999:Multivariate Analysis; D020380:Needs Assessment; D010353:Patient Education as Topic; D015397:Program Evaluation; D012648:Self Care; D011795:Surveys and Questionnaires; D060305:Transition to Adult Care; D055815:Young Adult
Adolescents; Cardiopathie congénitale; Congenital heart disease; Connaissances sur la santé; Educational programme; Health knowledge; Programme éducatif; Transition to adult care; Transition vers les soins pour adultes