Summary
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.
Aims
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).
Conclusion
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.
Résumé
Contexte
Les adolescents et jeunes adultes avec une cardiopathie congénitale (CC) ont des besoins médicaux spécifiques et nécessitent un suivi à vie. Des interventions visant à faciliter la transition entre les soins pédiatriques et les soins adultes sont recommandées, mais les résultats restent largement sous-étudiés.
Objectifs
Identifier les besoins éducatifs et l’impact d’une intervention à la transition sur les connaissances et les compétences d’autogestion chez les adolescents et les jeunes adultes atteints d’une CC.
Méthodes
De septembre 2014 à mai 2015, 115 adolescents et jeunes adultes avec une CC (âge moyen de 17 ± 2 ans ; 47 filles) ont été consécutivement inclus. Parmi eux, 22 avaient participé à un programme d’éducation thérapeutique au cours des 11 ± 4 mois précédents (groupe éduqué) et 93 n’avaient pas suivis ce programme (groupe témoin). Les connaissances sur leur état de santé ont été évaluées à l’aide d’un questionnaire spécifique ciblé sur les CC.
Résultats
Le score global moyen de connaissances en santé (maximum 20) dans le groupe éduqué était significativement plus élevé que dans le groupe témoin (11,7 ± 3,5 vs. 8,6 ± 3,2 ; p < 0,001). Nous avons observé des lacunes significatives dans les connaissances du groupe témoin : par exemple 61,3 % vs. 90,0 % connaissaient le nom de leur CC ( p = 0,01), 21.5 % vs. 63,6 % savaient le suivi ( p = 0,004) et 12.8 % vs. 75,0 % des filles savaient qu’elles devaient contrôler leur état cardiaque avant un projet de grossesse. En analyse multivariée, après ajustement pour l’âge, l’inclusion dans un programme éducatif à la transition et le niveau académique du patient étaient des déterminants significatifs sur le niveau de connaissances sur la santé ( p < 0,01).
Conclusion
L’éducation pendant la période de transition adolescent-adulte a un impact significatif sur les connaissances de santé des patients. Des programmes éducatifs structurés dédiés aux CC pourraient améliorer la compréhension et prévenir d’éventuelles complications futures.
Background
Transition from paediatric to adult care constitutes a critically vulnerable period for adolescents with congenital heart disease (CHD). During this time, patients are expected to acquire significant responsibilities in managing their lifestyles and health care . As stated by the American Heart Association , age-appropriate education about medical conditions, decision-making, self-care and self-advocacy are among the major goals of formal transition programmes in CHD. The development of structured patient education programmes has been proposed as a key element in the transition of adolescents with CHD into the adult care settings . However, the implementation of systematic and structured intervention programmes before transition is still relatively uncommon in many paediatric cardiology centres. To date, few studies have investigated the direct impact of structured interventions targeting not only disease-specific knowledge but also general health lifestyle behaviours and medical care in patients with CHD .
Our primary aim was to determine the educational needs of adolescents and young adults with CHD and the impact of a structured education programme at transition on improving health knowledge (CHD and general lifestyle and medical care knowledge) as well as self-management skills in this population. Our secondary aim was to identify patient-specific factors associated with general health knowledge in adolescents and young adults with CHD.
Methods
Study setting and participants
This descriptive, cross-sectional study was conducted in the paediatric department of Necker Hospital (Paris, France) between September 2014 and May 2015. Patients were consecutively included according to the following criteria: (1) patients with CHD, mainly repaired tetralogy of Fallot, transposition of the great arteries, congenital aortic valve dysfunction, aortic coarctation, atrioventricular septal defect and CHD with univentricular physiology; (2) follow-up at the outpatient clinic by a paediatric cardiologist during the study period; (3) candidate patients for a transition programme according to US guidelines , concerning CHD patients aged 14–19 years’ old. We excluded (1) patients with important developmental delays; (2) those with a cardiac disease other than CHD (such as arrhythmia, dilated or hypertrophic cardiomyopathy); (3) patients who had already initiated the transfer to adult cardiac care; and (4) non-French speakers. Participants were divided into two groups: those who had previously been included in a structured educational programme for patients with CHD during the transition from adolescence to adulthood (the education group) and those who had not been included in this programme (comparison group).
Transitional educational programme and standard of care
A structured education programme for patients with CHD during the transition from adolescence to adulthood was developed at our centre. The education programme was conducted by two experienced cardiology nurses (CP and MT). It consisted of individual consultations with the specialized nurses before the standard cardiology check-up examination. Each appointment sought to evaluate patients’ level of knowledge on diverse health questions, such as knowledge of their CHD and their treatments using a structured questionnaire covering curriculum objectives of the transition programme (see Supplementary material ). Nurses recorded possible general cognitive difficulties (i.e. reading or calculation difficulties), family situation (i.e. presence of siblings) and patients’ academic level. They also recorded risky behaviours (e.g. drugs, alcohol, smoking), noted potential adolescent emotional difficulties about cardiac disease, and level of engagement. At each session of the education programme, patients were educated on several health issues, such as (1) potential cardiac symptoms that require medical assistance (e.g. arrhythmias, shortness of breath); (2) the importance of long-term, frequent medical follow-up by a cardiologist; (3) risky behaviours to avoid (e.g. drugs, tattoos, piercings); and (4) a discussion on healthy habits and the prevention of sexually transmitted diseases and Osler endocarditis. These individual meetings were associated with group sessions addressing a common topic (e.g. gynaecology, sport). If patients were identified as at risk, they were referred to a specialist for further clinical evaluation. The transition education programme used several educational tools including flyers, a detailed brochure called “Health Passport” with information on adult transition process and recommendations as well as a video game that trained patients on knowledge about their own CHD.
A total of 183 patients had been already included in the structured education programme at the start of this study. Patient participation depended on their cardiologist recommendation and on patients’ and their parents’ motivation. The education programme has been approved by Ile-de-France Regional Health Service since July 2011 (ARS authorization number: ETP 12/20).
Standard care was provided to all participants. There was no standardization of care in our centre with respect to promotion of self-management or communication skills, or education about the heart. Some participants were provided verbal and/or written information by their cardiologist at their discretion.
Study procedures
The following data were collected from medical records and self-reported questionnaires: age, CHD diagnosis, paternal and maternal socio-economic status according to the Institut National de la Statistique et des Etudes Economiques (INSEE) national classification ( www.insee.fr ), history of hospitalizations for cardiac reasons during the 5 years preceding inclusion, and family structure (whether the patient had any siblings and parental status [single-parent family, married or re-married]). The complexity of CHD was classified as simple, moderate or severe according to the Bethesda classification . Written informed consent was obtained from participants and their parent or legal guardian.
All participants in both groups (education and comparison) completed a specific knowledge questionnaire in the paediatric cardiology clinic at study enrolment. Before the present study, four experts (i.e. one adult CHD cardiologist, one paediatric cardiologist, and two paediatric cardiology nurses) were invited to rate the relevance and the clarity of each item of the specific knowledge questionnaire. Patients completed the questionnaire onsite and were not provided with alternative ways to complete it (e.g. web access). This questionnaire also underwent pilot testing by 12 adolescents with CHD before the beginning of the study to confirm content validity. Patients who participated in the pilot study were not enrolled in the present study. The questionnaire included 29 items for boys and 34 for girls, targeting six domains: knowledge on CHD and cardiac surgery, cardiac follow-up and treatment, cardiac symptoms and self-management, risky behaviours and healthy lifestyle, insurance and professional orientation, recurrence and gynaecological issues. Accordingly, each participant was assigned a score (numerator/denominator × 20). Given the heterogeneity of previous medical and surgical interventions and the need for medications in adolescents with heart disease, not all questions were applicable to all patients so the denominator varied between questions. Patients could freely write answers to the question. If necessary, they received feedback by a cardiologist specialized in CHD (ML). Scores ranged from 0 (incorrect answer) to 1 (correct answer). The reproducibility of the questionnaire was studied by a test–retest procedure (comparison of scores and item by item). For this, the questionnaire was mailed to 12 subjects who had already filled in the questionnaire.
To determine inter-observer variability in interpretation of responses, the scale was scored independently for 20 participants by two reviewers: a cardiologist (ML) and a nurse (MT) specialized in CHD. The study was performed in accordance with the principles set out in the declaration of Helsinki and was approved by the Ethics Review Board of our institution (Comité de Protection de la Personne Ile de France 3, Ref. DS/LG/2013-301).
Statistical analysis
Participants’ characteristics in the education and comparison groups are described using proportions for qualitative characteristics and means ± standard deviations (SDs) for continuous variables. A non-parametric Mann–Whitney test or a two-sample t test, when appropriate, was used to evaluate the differences between the groups. Qualitative values were compared using a chi-square or Fisher test. Association between variables related to patient characteristics and questionnaire scores was tested by simple and multiple regression models. Only variables with a normal distribution and meeting the statistical P value threshold of <0.1 in univariate analysis were included in the multivariable model adjusted for age. The questions were categorized into six areas of knowledge according to recommendations . The internal consistency of these six areas was tested by the Cronbach alpha coefficient. To measure the level of concordance of all questions between test and retest, concordance rates and Kappa coefficients were calculated. We also calculated intra-class correlation coefficients (ICCs) to assess intra- and inter-observer variability of the questionnaire score. P values <0.05 were considered significant. All data were analyzed using MedCalc Statistical Software version 12.7.7 (MedCalc Software bvba, Ostend, Belgium; http://www.medcalc.org ; 2013).
Results
Study population
We approached 117 potential participants, of whom two refused to participate (neither were included in the education programme). Our sample therefore consisted of 115 patients with CHD enrolled at our cardiology clinic, of whom 22 (19.1%) were in the education group. Educated patients were enrolled a mean of 11 ± 4 months after the last educational session. The mean age of the cohort was 17 ± 2 years. Baseline characteristics of the education and comparison groups are summarized in Table 1 . No significant differences in sex, age, CHD complexity, family status or medical history of hospitalization for cardiac complications were observed. There was no significant difference in academic attainment level between the two groups: most were in high school (64.3%), 20.0% were in middle school (including vocational training) and 15.75% were at college/university.
| Education group ( n = 22) | Comparison group ( n = 93) | |
|---|---|---|
| Men | 14 (63.6) | 54 (58.1) |
| Age (years) | 17 ± 2 | 17 ± 1 |
| Complexity of CHD | ||
| Simple | 3 (13.6) | 24 (25.8) |
| Moderate | 10 (45.5) | 35 (37.6) |
| Complex | 9 (40.9) | 34 (36.6) |
| Parental status | ||
| Married | 16 (72.7) | 55 (59.1) |
| Divorced | 4 (18.2) | 27 (29.0) |
| Reconstituted family | 2 (9.1) | 11 (11.8) |
| Highest academic attainment | ||
| Middle school | 3 (13.6) | 20 (21.5) |
| High school | 14 (63.6) | 60 (64.5) |
| College/university | 5 (22.7) | 13 (14.0) |
| Hospitalization during the last 5 years | 5 (22.7) | 19 (20.4) |
| History of endocarditis | 0 | 0 |
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