Nurse specialists in adult congenital heart disease: the current status in Europe.

AIM: Recommendations for the management of adults with congenital heart disease indicate that specialist referral centres should employ nurse specialists who are trained and educated in the care for these patients. We surveyed the involvement, education and activities of nurse specialists in the care for adults with congenital cardiac anomalies in Europe.
METHODS: The Euro Heart Survey on Adult Congenital Heart Disease has previously showed that 20 out of 48 specialist centres (42%) have nurse specialists affiliated with their programme. Fifteen of these 20 centres (75%) validly completed a web-based survey tool.
RESULTS: Specialist centres had a median number of 2 nurse specialists on staff, corresponding with 1 full-time equivalent. In most centres, the nurse specialists were also affiliated with other cardiac care programmes, in addition to congenital heart disease. The involvement of nurse specialists was not related to the caseload of inpatients and outpatient visits. Physical examination was the most prevalent activity undertaken by nurse specialists (93.3%), followed by telephone accessibility (86.7%), patient education (86.7%), co-ordination of care (73.3%), and follow-up after discharge (73.3%). Patient education covered mainly prevention and prophylaxis of endocarditis (100%), cardiovascular risk factors (92.3%), sport activities (92.3%), the type and characteristics of the heart defect (92.3%), the definition and aetiology of endocarditis (84.6%), cardiac risk in case of pregnancy (84.6%), and heredity (84.6%). Two third of the nurse specialists were involved in research.
CONCLUSION: This survey revealed gaps in the provision of care for these patients in Europe and demonstrated that there is room for improvement in order to provide adequate chronic disease management. The results of this study can be used by individual hospitals for benchmarking.