Caring for adults with congenital heart disease in a regional setting. 2018

Emily Mary O'Brien, and David Law, and David Celermajer, and Peter Watson Grant, and Jon Waites
Coffs Harbour Health Campus, Coffs Harbour, New South Wales, Australia.

OBJECTIVE The number of adults with congenital heart disease has increased with improvements in surgical and medical management, posing a challenge for regional and rural settings, which might have difficulties accessing specialised professionals with congenital heart disease services. This study aims to ascertain the demographics and management of adults with congenital heart disease seen by a cardiology practice in regional Australia to better understand the needs of regional adults with congenital heart disease. METHODS A descriptive study using data from clinical notes collected between April 2013 and April 2016. METHODS A private cardiology practice in Coffs Harbour, New South Wales. The practice has a treating cardiologist, senior sonographer, visiting cardiothoracic surgeon and visiting paediatric cardiologist. METHODS One-hundred-and-one adults with congenital heart disease (age: 16-88 years; 55 women). METHODS Congenital heart disease defect, lesion severity, referral reason, past surgery, pulmonary hypertension, cardiac surgery during the study, mortality, adherence with follow-up plans and specialist referral. RESULTS Sixty-six patients had simple congenital heart disease, 24 had congenital heart disease of moderate complexity and 11 had congenital heart disease of great complexity. Most were referred for surveillance, seven were referred due to pregnancy and eight were new diagnoses. Six patients died, nine had cardiac operations and five were treated for pulmonary arterial hypertension. Overall adherence to the treating cardiologist's follow-up plans was 84%. All patients with congenital heart disease of great complexity were referred to congenital heart disease specialists. CONCLUSIONS A substantial number of patients had complex pathology, new diagnoses or required surgery, highlighting the importance of developing integrated services with the close support of outside specialists in managing adults with congenital heart disease in regional settings.

UI MeSH Term Description Entries
D008297 Male Males
D008875 Middle Aged An adult aged 45 - 64 years. Middle Age
D009517 New South Wales A state in southeastern Australia. Its capital is Sydney. It was discovered by Captain Cook in 1770 and first settled at Botany Bay by marines and convicts in 1788. It was named by Captain Cook who thought its coastline resembled that of South Wales. (From Webster's New Geographical Dictionary, 1988, p840 & Room, Brewer's Dictionary of Names, 1992, p377)
D002300 Cardiac Care Facilities Institutions specializing in the care of patients with heart disorders. Cardiac Care Facility,Facilities, Cardiac Care,Facility, Cardiac Care
D003695 Delivery of Health Care The concept concerned with all aspects of providing and distributing health services to a patient population. Delivery of Dental Care,Health Care,Health Care Delivery,Health Care Systems,Community-Based Distribution,Contraceptive Distribution,Delivery of Healthcare,Dental Care Delivery,Distribution, Non-Clinical,Distribution, Nonclinical,Distributional Activities,Healthcare,Healthcare Delivery,Healthcare Systems,Non-Clinical Distribution,Nonclinical Distribution,Activities, Distributional,Activity, Distributional,Care, Health,Community Based Distribution,Community-Based Distributions,Contraceptive Distributions,Deliveries, Healthcare,Delivery, Dental Care,Delivery, Health Care,Delivery, Healthcare,Distribution, Community-Based,Distribution, Contraceptive,Distribution, Non Clinical,Distributional Activity,Distributions, Community-Based,Distributions, Contraceptive,Distributions, Non-Clinical,Distributions, Nonclinical,Health Care System,Healthcare Deliveries,Healthcare System,Non Clinical Distribution,Non-Clinical Distributions,Nonclinical Distributions,System, Health Care,System, Healthcare,Systems, Health Care,Systems, Healthcare
D005260 Female Females
D006330 Heart Defects, Congenital Developmental abnormalities involving structures of the heart. These defects are present at birth but may be discovered later in life. Congenital Heart Disease,Heart Abnormalities,Abnormality, Heart,Congenital Heart Defect,Congenital Heart Defects,Defects, Congenital Heart,Heart Defect, Congenital,Heart, Malformation Of,Congenital Heart Diseases,Defect, Congenital Heart,Disease, Congenital Heart,Heart Abnormality,Heart Disease, Congenital,Malformation Of Heart,Malformation Of Hearts
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000293 Adolescent A person 13 to 18 years of age. Adolescence,Youth,Adolescents,Adolescents, Female,Adolescents, Male,Teenagers,Teens,Adolescent, Female,Adolescent, Male,Female Adolescent,Female Adolescents,Male Adolescent,Male Adolescents,Teen,Teenager,Youths
D000328 Adult A person having attained full growth or maturity. Adults are of 19 through 44 years of age. For a person between 19 and 24 years of age, YOUNG ADULT is available. Adults

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