Background and aim: The number of adults with congenitally malformed hearts is growing, and there is an increasing demand for their continuous follow-up. At present, different programmes have been established for adults with congenital cardiac disease, but there is a lack of knowledge regarding how education and psychosocial support should be given to achieve effects. Before developing educational programmes, it is necessary to be aware of the perspective of the patients. The aim of our study, therefore, was to describe how adults with congenitally malformed hearts experience their educational needs.

Methods: The study had a qualitative design. We interviewed 16 adults, aged from 19 to 55 years, with congenitally malformed hearts.

Results: Two-way communication emerged as crucial to individualising education. Without good communication, those with congenitally malformed hearts, receiving information from providers of healthcare, are unable to transfer the information received. Thus, individualised education gives access to knowledge and the tools required to manage important areas in life, such as the congenital cardiac malformation, physical activity, the situation of life, treatment, and resources available for healthcare. The information given should provide easy access to knowledge through proper educational materials and methods, and be given with respect for the individual. This is facilitated if the education is tailored to the requirements of the individual in a holistic approach, and is provided through good communication.

Conclusion: Our investigation shows that a structured educational programme needs to start from the perspective of the individual patient, and that two-way Communication needs to be taken into consideration to enhance knowledge.

Background and Research Objective: Adults with congenitally malformed hearts have knowledge gaps regarding their heart condition, and their level of knowledge is not routinely assessed during follow-up. One reason for this is that there are few validated, user-friendly questionnaires to assess knowledge about congenital heart disease and its effects on daily life. Failure to identify low levels of knowledge could lead to less motivated and insecure individuals not actively involved in treatment and care of their heart condition. Therefore, the objective of this study was to develop and test a knowledge scale for adults with congenitally malformed hearts.

Participants and Methods: The development and psychometric evaluation of the Knowledge Scale for Adults With Congenitally Malformed Hearts (KnoCoMH) followed 2 phases: (1) development and evaluation of the initial version, with face validity and content validity assessed by experts and adults with congenitally malformed hearts, and (2) evaluation and refinement of the KnoCoMH in adults with congenitally malformed hearts, including item difficulty level, internal consistency, and test-retest reliability.

Results: The development and evaluation of a knowledge scale for adults with congenitally malformed hearts resulted in the KnoCoMH including 46 items in 4 domains: General Knowledge, with a Kuder-Richardson formula 20 (KR-20) value of 0.68; Medical Treatment, with a KR-20 value of 0.74; Endocarditis Prophylaxis, with a KR-20 value of 0.90; and Contraceptives and Pregnancy, with a KR-20 value of 0.65. Test-retest evaluation showed significant correlations between 0.50 and 0.67 (P < .01) in all 4 domains. There was good variation in item difficulty, with a mean value of 0.56 in General Knowledge, 0.62 in Medical Treatment, 0.33 in Endocarditis Prophylaxis, and 0.48 in Contraceptives and Pregnancy.

Conclusions: The KnoCoMH has acceptable psychometric properties for most of the knowledge domains included. It can be used for evaluating knowledge among adults with congenitally malformed hearts and its associations with other outcomes. However, further studies are advisable to test construct validity, predictive validity, and responsiveness.

OBJECTIVE: Various programmes for adults with congenitally malformed hearts have been developed, but detailed descriptions of content, rationale and goals are often missing. The aim of this study was to describe and make an initial evaluation of a follow-up model for adults with congenitally malformed hearts, focusing on education and psychosocial support by a multidisciplinary team (EPS).

METHODS: The model is described in steps and evaluated with regards to perceptions of knowledge, anxiety and satisfaction.

RESULTS: The EPS model included a policlinic visit to the physician/nurse (medical consultation, computer-based and individual education face-to-face as well as psychosocial support) and a 1-month telephone follow-up. Fifty-five adults (mean age 34, 29 women) with the nine most common forms of congenitally malformed hearts participated in the EPS model as well as the 3-months follow-up. Knowledge about congenital heart malformation had increased in 40% of the participants at the 3-months follow-up.

CONCLUSION: This study describes and evaluates a model that combines a multidisciplinary approach and computer-based education for follow-up of adults with congenitally malformed hearts. The EPS model was found to increase self-estimated knowledge, but further evaluations need to be conducted to prove patient-centred outcomes over time.

PRACTICE IMPLICATIONS: The model is now ready to be implemented in adults with congenitally malformed hearts.

Objective: To evaluate the effects of a model including computer-based and individualised education and psychosocial support for adults with congenitally malformed hearts.

Design: Prospective randomised controlled multicentre trial.

Setting: Four hospital outpatient clinics in Sweden.

Participants: Adults with congenitally malformed hearts.

Interventions: Comparing usual care twith education and psychosocial support by a multidisciplinary team.

Main Outcome Measures: Knowledge and perceived control regarding the heart condition, and symptoms of anxiety and depression at baseline, 3 and 12-months follow-up.

Results: Out of 114 included participants, 58 were randomised to the control group, and 56 to the intervention group. The average age was 34 (SD 13.5) years. Results showed a significant between-group treatment effect in general knowledge after 3 months (effect size 0.63, p=<0.01), and 12-month (effect size 0.53, p= 0.02). Knowledge regarding endocarditis also increased significantly between-group after 3 months (effect size 0.87, p= <0.01), and over time between baseline and 3 months (effect size 1.43, p=<0.001), and between baseline and 12-months (effect size 0.58, p= 0.02). There were no changes in knowledge in domains regarding self-management of medical treatment and contraceptives and pregnancy in any of the groups. Further, the intervention did neither increase nor decrease the perceived control over the heart condition or symptoms of anxiety and depression.

Conclusion: Education and psychosocial support by a multidisciplinary team was effective in improving and maintaining knowledge about self-management in adults with heart malformation. Future research is needed to determine the long-time effects on selfmanagement behaviours and perceived control.