Description and initial evaluation of an educational and psychosocial support model for adults with congenitally malformed hearts

Abstract

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.

Disease-specific knowledge and information preferences of young patients with congenital heart disease

“…Previous studies have found that young patients believe information to be the key to assuming responsibility for their condition. [26][27][28] (Unmet) Information needs in children, adolescents, and adults with congenital heart disease Our study revealed a significant lack of information among all three-age cohorts. Patients are particularly keen to discuss psychosocial topics such as sport/leisure/travel, work/career, and pregnancy/ family planning, but their doctors seem not to meet their information preferences, according to our patients' reports.…”

Effectiveness of structured patient education on the knowledge level of adolescents and adults with congenital heart disease

“…Unfortunately, this pre-post study did not objectively assess the impact of this model on the level of knowledge through the use of a questionnaire. 21…”

“…Rönning and colleagues performed an initial evaluation of the implementation of an Education and Psychosocial Support (EPS) model. 21 This model comprised three components: medical consultation by an ACHD cardiologist; computer-based education; and psychosocial support provided by a multidisciplinary team. A three-month follow-up of 55 adults who received this type of education showed an increase in self-perceived levels of knowledge.…”

“…3,5,9,16,18 The comparability of these cross-sectional studies is however limited since the level of knowledge was assessed using different methods: by interview; 7,14 drawing techniques; 13 or structured questionnaire. 3,5,6,[8][9][10]12,15,16,[18][19][20][21] However, in several studies that used questionnaires, these had limited or no data that supported the validity or reliability of the questionnaires. [8][9][10]12,15,16,18 To enhance the level of knowledge in patients, repetitive and structured educational interventions are recommended.…”