Follow up of Adults With Congenitally Malformed Hearts With Focus on Computer-Based Education and Psychosocial Support
Follow up of Adults With Congenitally Malformed Hearts With Focus on Computer-Based Education and Psychosocial Support
The number of adults with congenitally malformed hearts is increasing. According to a
 prospective population-based cohort study from Sweden (1992-2001) the prevalence of
 cardiovascular defects was 9.1 per 1,000 births, which is comparable to other presented
 prevalence data in the world.On the basis of 9 million inhabitants, Sweden should have
 approximately 82000 born with CHD and approximately 20000 will, in adult age, need regular
 follow up in cardiac care. This is a result of the greater improvements within paediatric
 heart surgery and there is an increasing demand for continuous follow up in the healthcare
 system.[2] Guidelines from the European Society of Cardiology and the Canadian Cardiovascular
 Society recommend follow-up oriented towards both medical and psychosocial problems.

 Earlier studies have shown that adults with CHD have poor knowledge about their heart
 disease.The results are difficult to summarise because of the use of different instruments,
 methods and sample sizes. Most of the adults with CHD did not know their clinical diagnosis
 or what endocarditis was. However, we do not know if everyone in these studies was
 recommended endocarditis prophylactics or their definition of poor knowledge.

 At present different programmes for adults with CHD are established in hospital outpatient
 clinics. These studies describe the established programmes. They also address the needs for
 development of care e.g. a multicenter approach, transitions from paediatric to adult health
 care, delivery care in Europe, programmes for pregnancy, how to provide clinical strategies,
 health care resource utilization or outpatient nursing clinic for adults with CHD. But there
 is a lack of knowledge regarding how education and psychosocial support should be given to
 adults with congenitally malformed hearts and what effects that can be achieved. The aim is
 to evaluate the effects of a nurse-led intervention consisting of education by a
 computer-based educational programme and psychosocial support to adults with congenitally
 malformed hearts.
Sample: 114 adults with congenitally malformed hearts as ventricular septal defect, atrial
 septal defect, coarctation of the aortae, tetralogy of Fallot, complete transposition of the
 great arteries, congenitally corrected transposition of the great arteries, single ventricle,
 Ebstein anomaly, coarctation of the aortae, Eisenmenger syndrome and aortic valve stenosis.

 Method and Measures: Randomised, controlled study where. the iIntervention-group will receive
 medical consultation, nurse consultation with psychosocial support, verbal and computer-based
 education. A care-plan with individual goals will be developed for each individual. Follow up
 of the care plan will be conducted after 1 month. The Control-group will receive: standard
 care with medical consultation.

 Data will be collected at baseline and after 3 and 12 months. Instruments

 -  Knowledge instrument developed in Belgium , translated, further developed, tested in
 study 3. Now further reliability and validity tests in this study 4.

 -  Health related quality of life, Short Form 36 (SF-36). SF-36 has good validity and
 reliability and is adjust to Swedish circumstances • Anxiety and depression, Hospital
 Anxiety and Depression Scale, (HADS)

 -  General health related quality of life, Euroqol 5 dimensions (EQ-5D)

 -  Perceived control
Inclusion Criteria:

 -  adults with uncomplicated congenitally malformed hearts (ventricular septal defect,
 atrial septal defect, coarctation of the aortae, aortic valve stenosis) and
 complicated congenitally malformed hearts (tetralogy of Fallot, complete transposition
 of the great arteries, congenitally corrected transposition of the great arteries,
 Ebstein anomaly and Eisenmenger syndrome),

 Exclusion Criteria:

 -  complicating serious co-morbidity such as hereditary heart diseases (age-related
 coronary heart diseases, valve diseases), other diseases or life-threatening diseases,
 psychiatric illness or inability to read or understand Swedish.