Adolescents with congenital heart disease (CHD) must take responsibility for their life and care. This requires that they have sufficient knowledge about their heart disease, treatment, and preventive measures. Thus, CHD-related education should be directed to adolescents. Research on adolescents’ understanding and knowledge of CHD is limited. It is unknown what adolescents with CHD know about their heart defect, treatment, and preventive measures necessary to avoid complications. We addressed these questions in a descriptive cross-sectional study of 91 adolescents with CHD (53% males; median age 17 years). In the present study, we assessed the subjects’ knowledge of CHD using the Leuven Knowledge Questionnaire for Congenital Heart Disease. The results showed that the patients had adequate knowledge (>80% correct answers) about the need for regular follow-up, their required diet, past treatment, and dental practices. They had moderate knowledge (50% to 80% correct answers) about the frequency of follow-up, occupational choices, medication regimen, and sexual activities. However, the patients had poor knowledge (<50% correct answers) of the name of their heart defect; the reasons for follow-up; the effects of competitive sports; the symptoms that reflect deterioration of their heart disease; the definition, characteristics, and risk factors of endocarditis; the possibility of recurrent episodes of endocarditis during their lifetime; the effect of smoking and alcohol on their heart disease; the hereditary nature of their condition; the suitability of intrauterine devices as contraceptives; the appropriateness of oral contraceptives; and the risks of pregnancy. In conclusion, the results of the present study have showed that the level of knowledge of adolescents with CHD has significant gaps.
To date, several studies investigating the level of knowledge of patients with congenital heart disease (CHD) have been undertaken. Five studies have been conducted in children, and 9 studies have been performed in adults. To our knowledge, only 4 studies have included adolescents among their subjects. One study specifically targeted adolescent patients, focusing on their knowledge of bacterial endocarditis. Other aspects of CHD, however, were not addressed. Thus, information on the level of knowledge of adolescents with CHD is scant. Therefore, we designed a study to investigate what adolescents with CHD know about their heart defect, its treatment, and the preventive measures necessary to avoid complications.
Methods
We recruited literate, Dutch-speaking adolescents with CHD to participate in our descriptive cross-sectional study. Adolescents were eligible for the study at their initial visit to the Adult Congenital Heart Disease (ACHD) program’s clinic after their transfer from pediatric cardiology. At the University Hospitals of Leuven, Belgium, it is standard practice for pediatric patients with CHD to be transferred to adult-focused care when they reach 16 years of age, unless the patient is medically unstable. Patients were excluded from our study if they had learning disabilities. In a 13-month period, 100 adolescents who met the inclusion criteria were asked to participate. Of these 100 patients, 1 refused to participate because of a lack of interest, and 8 were excluded because of practical reasons. Hence, we recruited 91 adolescents with CHD. Of these, 53% were males and 47% were females. The patients had a median age of 17 years. The demographic and clinical characteristics of the study sample are summarized in Table 1 .
| Variable | n |
|---|---|
| Gender | |
| Male | 48 (53%) |
| Female | 43 (47%) |
| Age (years) | |
| Median | 17 |
| Quartile 1 | 16 |
| Quartile 3 | 18 |
| Range | 15–32 |
| Marital status | |
| Unmarried (living with parents) | 87 (96%) |
| Living together | 2 (2%) |
| Living alone | 1 (1%) |
| Married | 1 (1%) |
| Highest educational level | |
| Vocational high school | 29 (31%) |
| Technical high school | 32 (34%) |
| High school/college/university | 30 (32%) |
| Responsible for daily management of care | |
| Parents | 1 (1%) |
| Patient | 23 (25%) |
| Patient and parents | 67 (74%) |
| Treatment | |
| Surgery | 31 (34%) |
| Medication | 4 (4%) |
| No treatment | 30 (33%) |
| Surgery and catheter intervention | 7 (8%) |
| Surgery, catheter intervention, and medication | 2 (2%) |
| Surgery and medication | 6 (7%) |
| Catheter intervention | 8 (9%) |
| Medication and catheter intervention | 3 (3%) |
| History of endocarditis | 0 (0%) |
| Number of pregnancies | 0 (0%) |
| Contraception (for women only) | |
| Pill | 19 (43%) |
| Other methods | 1 (2%) |
| No contraception | 23 (55%) |
| Primary medical diagnosis | |
| Ventricular septal defect | 26 (29%) |
| Coarctation of the aorta | 14 (16%) |
| Pulmonary valve stenosis | 11 (12%) |
| Transposition of great arteries | 5 (6%) |
| Aortic valve stenosis | 5 (6%) |
| Tetralogy of Fallot | 4 (5%) |
| Atrial septal defect type secundum | 3 (3%) |
| Congenitally corrected transposition of great arteries | 3 (3%) |
| Mitral valve regurgitation | 3 (3%) |
| Aortic valve regurgitation | 3 (3%) |
| Univentricular heart | 2 (2%) |
| Atrioventricular septal defect | 2 (2%) |
| Patent ductus arteriosus | 2 (2%) |
| Mixed aortic valve disease | 1 (1%) |
| Truncus arteriosus | 1 (1%) |
| Pulmonary atresia | 1 (1%) |
| Double aortic arch | 1 (1%) |
| Total anomalous pulmonary venous return | 1 (1%) |
| Marfan syndrome | 1 (1%) |
| Atrial septal defect type primum | 1 (1%) |
| Atrial septal defect type sinus venosus | 1 (1%) |
The demographic and clinical variables were gathered during patient interviews and from the patient medical records. The patients’ CHD knowledge was assessed using the Leuven Knowledge Questionnaire for Congenital Heart Disease, developed by Moons et al in 2001. We adapted the questionnaire using our experiences in the first study. The most current version of the questionnaire consists of 27 items and covers 5 domains, which were identified as relevant aspects of patients’ knowledge about CHD: (1) knowledge of the heart defect and treatment, (2) knowledge of the prevention of complications, (3) knowledge of physical activities, (4) knowledge of sexuality and heredity, and (5) knowledge of contraception and pregnancy planning. The researchers evaluated each patient’s answers as “correct,” “does not know,” or “incorrect” or “incomplete.”
When the patients arrived for their scheduled outpatient visit at the ACHD program’s clinic, a nurse from the advanced practice nursing team approached the patients and explained the aims and protocol of the present study. After oral informed consent was obtained, the nurse asked the patient to complete the knowledge questionnaire while in the waiting room. The nurse explicitly asked family members not to help the patient complete the questionnaire. Moreover, the patient was forbidden from consulting external sources. The advanced practice nurse checked the questionnaire for completeness and asked for additional information, if necessary. On completion, each patient and their parents entered the consultation room, where the advanced practice nurse used the completed questionnaire as a guide to provide appropriate patient education. The institutional review board of the University Hospitals Leuven approved the study protocol.
The data were analyzed using the Statistical Package for Social Sciences, version 16.00 (SPSS, Chicago, Illinois). The descriptive statistics of demographic and clinical variables are expressed in percentages, medians, and quartiles. The knowledge variables were dichotomized as correct or incorrect answers (the latter included the incomplete, does not know, and incorrect responses).
Results
Fewer than 1/2 of the patients knew the name of their heart defect, and only 28% could describe their heart defect or locate the lesion on a diagram ( Table 2 ). Most of the patients knew the frequency of follow-up required and the need for regular follow-up; however, only 46% indicated that the main purpose of follow-up was to detect clinical deterioration. Most of the patients had adequate knowledge about their past treatment. Of the 15 patients who took medications on a regular basis, 53% knew the name of the medication. Almost all the patients knew which diet they should follow. A small number of the patients could identify the symptoms that reflect deterioration of the heart disease, including dizziness, shortness of breath, palpitations, chest pain, fainting, increasing fatigue, and swollen feet and legs ( Table 2 ).
| Question | Correct | Incorrect | Does Not Know | Incomplete |
|---|---|---|---|---|
| 1. What is the name of your heart defect? | 41 (45%) | 9 (10%) | 33 (36%) | 8 (9%) |
| 2. Describe or indicate on the diagram where your heart is located. | 25 (27%) | 12 (13%) | 46 (51%) | 8 (9%) |
| 3. How often do you have to come to the clinic for follow-up for your congenital heart disease? | 71 (78%) | 14 (15%) | 6 (7%) | — |
| 4. What is the main purpose of the follow-up? | 42 (46%) | 0 (0%) | 0 (0%) | 49 (54%) |
| 5. How has your heart condition been treated to date? | 77 (85%) | 2 (2%) | 4 (4%) | 8 (9%) |
| 6. If you are receiving drug treatment, give the name, dose, schedule, reason or function, most important side effects, and interactions with other drugs or foods. ⁎ | 8 (53%) | 2 (13%) | 1 (7%) | 4 (27%) |
| 7. If you experience side effects from your drugs, does this mean you should stop taking them? | 37 (41%) | 3 (3%) | 50 (56%) | — |
| 8. Do you have to follow a diet? If you answer yes, please indicate the type of diet. | 86 (94%) | 0 (0%) | 5 (6%) | — |
| 9. Mark all symptoms that may occur if your heart condition deteriorates and for which you have to contact your cardiologist. | 8 (9%) | 0 (0%) | 39 (43%) | 44 (48%) |
| 10. If the congenital cardiologist informs you that everything is all right, does that mean that you do not need further follow-up? | 79 (87%) | 8 (9%) | 4 (4%) | — |
⁎ Only 15 of the 91 patients received drug treatments for their CHD at the survey.
Only 21% of the adolescents could correctly define endocarditis, and only 1 adolescent recognized unexplained fever for >5 days as the most characteristic sign of endocarditis ( Table 3 ). Few knew that endocarditis could recur, and 78% knew that they should not take antibiotics without consulting a doctor. Only a small number of patients knew the risk factors for endocarditis, including contaminated needles, bacteria from skin infections, dental abscesses, poor nail and skin care, and body piercing and tattooing. The patients, however, had good knowledge of dental practices. Most patients incorrectly believed that smoking and alcohol consumption, respectively, were more harmful to them than to their healthy counterparts ( Table 3 ).
| Question | Correct | Incorrect | Does Not Know |
|---|---|---|---|
| 11. What is endocarditis? | 19 (21%) | 11 (12%) | 61 (67%) |
| 12. What is the most typical sign or symptom of endocarditis? | 1 (1%) | 19 (21%) | 71 (78%) |
| 13. Can you only get endocarditis once in your lifetime? | 13 (14%) | 3 (3%) | 75 (83%) |
| 14. Do the following factors contribute to the onset of endocarditis? | |||
| Needle contamination (drug addicts) | 18 (20%) | 7 (8%) | 66 (72%) |
| Smoking | 7 (8%) | 25 (28%) | 59 (64%) |
| Bacteria from skin infections | 10 (11%) | 8 (9%) | 73 (80%) |
| Dental abscesses | 20 (22%) | 8 (9%) | 63 (69%) |
| Sexual activity | 22 (24%) | 1 (1%) | 68 (75%) |
| Poor nail and skin care | 7 (8%) | 17 (19%) | 67 (73%) |
| Body piercing and tattooing | 14 (15%) | 17 (19%) | 60 (66%) |
| 15. Because you have a congenital heart disease, should you take antibiotics immediately (without consulting a physician) if you have a temperature? | 71 (78%) | 7 (8%) | 13 (14%) |
| 16. Should you have a dental checkup at least once a year? | 76 (84%) | 8 (9%) | 7 (7%) |
| 17. Should you take antibiotics before every visit to the dentist? | 71 (78%) | 18 (20%) | 2 (2%) |
| 18. Do bleeding gums need extra attention? | 68 (75%) | 10 (11%) | 13 (14%) |
| 19. Should you clean your teeth at least once a day? | 87 (96%) | 3 (3%) | 1 (1.) |
| 20. Is smoking more harmful for patients with congenital heart disease than for other people? | 7 (8%) | 64 (70%) | 20 (22%) |
| 21. Is consuming alcohol 3 times a day more harmful for patients with congenital heart disease than for other people? | 22 (24%) | 31 (34%) | 38 (42%) |
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