title: Mortality amongst adults with congenital heart disease in Scotland: A population study
Creators: name: Rodgers, Samuel C.
Publisher: name: University of Glasgow
Year: 2020
Subjects: subject: congenital heart disease, mortality, population, survival, epidemiology.

description: The number of adults living with congenital heart disease has increased greatly over recent years. This has broadly been attributed to advances in the surgical management of children and adolescents born with wide ranging abnormalities of cardiac anatomy. As a result, adult congenital cardiology has become a specialty in its own right and specialist care is centralised in tertiary referral centres. Despite these improvements, patients rarely achieve a ‘cure’ and remain exposed to various clinical uncertainties and often premature mortality. Despite this, little is known regarding the current outlook for adults with congenital heart disease and the factors which influence outcomes. Furthermore, no substantive efforts have previously been made to describe ACHD mortality on a population basis in Scotland. These uncertainties and unanswered questions pose real problems to patients and clinicians alike. Providing guidance on seemingly simple matters such as participating in the workforce, the merits of a pension, or the risks involved with starting a family often defies consensus and is opinion based. Clearly in a modern age of evidence-based practice and shared decision making we must strive to do more. Scotland has one of the most complete and comprehensive indexes of clinical records in the world. With the ability to link patient data over time and between different records, an individual patient’s entire ‘in hospital’ history is logged and available in an anonymised format to facilitate academic study and service optimisation. This thesis has sought to utilise the unique opportunity afforded by this Scottish Morbidity Database to define the present state, and recent trends of mortality amongst adults with congenital heart disease in a truly non-selective, population wide cohort. Context is provided via a comprehensive analysis of the current, international literature followed by analysis of the survival and causes of death encountered for ACHD patients between 1986 and 2017. A total of 16,210 individuals were identified throughout the data period, of whom 4162 died. Anonymised data from the Scottish Morbidity Database was examined to establish; age, sex, underlying congenital heart disease, deprivation status (as established by Scottish Index of Multiple Deprivation), and the presence of co-morbidity (diabetes, atrial fibrillation, ischaemic heart disease, cerebrovascular disease, hypertension and cancer). Survival was seen to improve in more contemporary analyses. This improved survival was seen for both sexes, all degrees of socioeconomic deprivation and across the spectrum of ACHD complexity. Improved temporal survival persists upon adjustment for age, sex, co-morbidity and congenital lesion. Survival of men with ACHD is relatively poorer than for women with ACHD and this is predominantly accounted for by non-cardiovascular death. Individuals with ACHD were found to suffer disproportionate deprivation as compared to that of the general population. Women with ACHD experienced more deprivation than men with ACHD. Higher deprivation was associated with higher mortality and again, this persists in robustly adjusted analyses. The reported causes of death for adults with congenital heart disease changed over time. At the begging of the data period the majority of deaths were by cardiovascular causes. In more recent analyses, non-cardiovascular death dominates. The rate of reduction in cardiovascular deaths outstrips that of the general population. These analyses provide much needed insight into the survival prospects of the Scottish ACHD population and confirm the utility of the Scottish Morbidity Database as a resource. Improving survival coupled with a shift towards non-cardiovascular mortality highlights the importance of an holistic and integrated approach in the modern care of the ACHD patient. An important spotlight is shone on the socioeconomic disparity encountered by this cohort and provides a basis for further analyses to redress this as a matter of priority.