Survey of specialized tertiary care facilities for adults with congenital heart disease
Female; Humans; Male; Adult; Health Care Surveys; Questionnaires; Middle Aged; Treatment Outcome; Program Evaluation; Survival Analysis; Quality of Health Care; adolescent; patient care team; Adolescent Transitions; Hospitalization/statistics & numerical data; Heart Defects; Resource Allocation; Cardiac Care Facilities/organization & administration/utilization; Congenital/diagnosis/mortality/surgery; Europe/epidemiology; North America/epidemiology; Patient Admission/statistics & numerical data; Reoperation/utilization
BACKGROUND: Specialized tertiary care facilities developed in response to the increasing numbers of adults with congenital heart disease (CHD). Because this patient population comprises a relatively new area of specialized cardiovascular interest, the first facilities necessarily evolved without preexisting guidelines or interaction. OBJECTIVES: To characterize the major features of the six original and largest tertiary adults CHD facilities. METHODS: Written questionnaire sent to six participating facilities in North America and Europe. Information was analyzed centrally. RESULTS: All but one facilities was established over 20 years ago, and each cares for over 1500 patients. Hospital admissions ranged from 100 to 660 patients/unit/year. Of the total number of registered patients, 52-81% had undergone one or more reparative surgeries. Reoperations constituted 25-80% of the 50-170 operations/unit/year. Overall mean surgical mortality was 1.9%/year. Inpatient and outpatient care was provided in adult (n = 4) or both adult and pediatric (n = 2) settings. All six facilities enjoyed close collaboration between adult and pediatric cardiologists, cardiac surgeons, nurse specialists and cardiac and non-cardiac consultants. Training and research were pivotal activities. CONCLUSIONS: Provision of comprehensive care by multidisciplinary teams including adult and pediatric cardiologists, cardiac surgeons, specialized nurses and other cardiac and non-cardiac consultants was the unifying feature for all six tertiary care facilities reported here. There were minor differences among them based on available resources, local expertise and national health care policies. There appears to be a significant shortfall in tertiary care provision for the adult with CHD that requires further planning and resource allocation. These data may be useful for new and evolving adult CHD services.
2004
Niwa K; Perloff JK; Webb GD; Murphy D; Liberthson R; Warnes CA; Gatzoulis MA
International Journal Of Cardiology
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.ijcard.2003.06.019" target="_blank" rel="noreferrer">10.1016/j.ijcard.2003.06.019</a>
The spectrum of adult congenital heart disease in Europe: morbidity and mortality in a 5 year follow-up period. The Euro Heart Survey on adult congenital heart disease
Female; Humans; Male; Pregnancy; Pregnancy Complications; Adult; Data Collection; Follow-Up Studies; Aged; Middle Aged; Survival Analysis; adolescent; Adolescent Transitions; Patient Acceptance of Health Care/statistics & numerical data; Heart Defects; Europe/epidemiology; Ambulatory Care/statistics & numerical data; Cardiovascular Agents/therapeutic use; Cardiovascular/mortality; Congenital/mortality
AIMS: To describe clinical and demographic characteristics at baseline of a European cohort of adults with congenital heart disease (CHD) and to assess mortality and morbidity in a 5 year follow-up period. METHODS AND RESULTS: Data collected as part of the Euro Heart Survey on adult CHD was analysed. This entailed information transcribed from the files of 4110 patients diagnosed with one of eight congenital heart conditions ('defects'), who consecutively visited the outpatient clinics of one of the participating centres in 1998. The patients were included retrospectively and followed until the end of 2003 for a median follow-up of 5.1 years. Notwithstanding their overall relatively good functional class and low mortality over the follow-up period, a considerable proportion of the patients had a history of endocarditis, arrhythmias, or vascular events. There were major differences between the eight defects, both in morbidity and regarding specific characteristics. Outcomes were worst in cyanotic defects and in the Fontan circulation, but a considerable proportion of the other patients also suffer from cardiac symptoms. In particular, arrhythmias are common. CONCLUSION: The spectrum of adult CHD in Europe emerging from this survey is one of a predominantly young population with substantial morbidity but relatively low mortality in a 5 year period.
2005
Engelfriet P; Boersma E; Oechslin E; Tijssen J; Gatzoulis MA; Thilen U; Kaemmerer H; Moons P; Meijboom F; Popelova J; Laforest V; Hirsch R; Daliento L; Thaulow E; Mulder B
European Heart Journal
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1093/eurheartj/ehi396" target="_blank" rel="noreferrer">10.1093/eurheartj/ehi396</a>