title: Congenital Heart Disease Index Hospitalisation in Scotland; 1990 – 2015
Creators: name: Lynn, Peter J.P.
Publisher: name: University of Glasgow
Year: 2022

description: Significant improvements in the surgical and peri-operative care of infants born with even the most complex of cardiac abnormalities has resulted in improved survival prospects and an increase in the number of individuals with congenital heart disease. It is now estimated that greater than 90% of children born with congenital heart disease will survive well into adulthood. Few of the surgical repairs for congenital heart disease result in a cure and often lesions are palliated, resulting in patients being subject to a variety of complications later in life and the prospect of further surgical or percutaneous intervention remains high for many. To care for these patients with increasingly complex cardiac anatomy and physiology, both paediatric and adult congenital cardiology care have had to expand and adapt to provide acute inpatient and outpatients services for this ever-growing population of individuals. While there have been estimates of prevalence and incidence of congenital heart disease, as well as limited analysis of healthcare utilisation on a global stage, the UK has fallen behind in description of hospitalisation in this welldefined cohort of patients. In Scotland we are fortunate enough to have a comprehensive patient record system, whereby demographic, diagnostic and procedural descriptors are recorded uniquely for each inpatient episode which can then be linked over time to further hospitalisations. These records are available for access by clinical teams, in an anonymised format, to enable research and facilitate service development. By utilising the Scottish Morbidity Records I have been able to describe the index hospitalisation of 17 990 individuals with congenital heart disease in Scotland between 1990 and 2015 and report on temporal trends in index hospitalisation with respect to underlying cardiac lesion, sex, age and socio-economic deprivation. Overall, the number of index hospitalisations and index hospitalisation rate, when indexed to the general population, was observed to increase particularly among all lesions as well as those with transposition of the great arteries with arterial switch, congenital valvular lesions, other lesions and those individuals with congenital cardiac lesions of mild complexity. There was no difference between the number of males and females who had an index hospitalisation. However, boys had higher levels of index hospitalisations in childhood, and women had higher levels of index hospitalisation compared to men in adulthood. Females were more likely to have an index hospitalisation with lesions of mild complexity, whereas males had a higher incidence of index hospitalisation with lesions of moderate complexity. There is a rising rate of index hospitalisation among infants (age &lt;1), adults (age≥16) overall, as well as young adults (ages 20-59), with a decreasing annual index hospitalisation rate among children likely reflecting a higher diagnosis rate of congenital heart disease occurring in infancy. With respect to socio-economic deprivation, areas in Scotland with increased levels of deprivation had a higher incidence of index hospitalisation which persisted across most congenital lesions and classifications of lesion complexity. Females and paediatric patients experienced higher levels of deprivation compared to males and adults respectively. These analyses have allowed the trends in index hospitalisation of Scottish patients with congenital heart disease to be studied and reported for the first time and will add substance to the sparse existing literature. They have demonstrated the utility of the Scottish Morbidity Record and will provide a framework for future service planning. One would hope that it acts as a beacon for further research in congenital heart disease in Scotland and elsewhere.