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Recent advances in acute stroke treatment have resulted in improved survival and outcomes. However, variation in stroke outcomes across hospitals is common. This indicates a need for continuous audit of stroke care to support quality improvement. In 2019, the Irish National Stroke Register moved to the National Office of Clinical Audit (NOCA), with the aim of developing it into a National Stroke Audit (Irish National Audit of Stroke (INAS)). This approach to managing national stroke audit follows international examples such as the UK Sentinel Stroke National Audit Programme (SSNAP). Coinciding with the move of the national stroke register to NOCA, a scoping review was established with the aim of developing a core minimum dataset for use in the Irish National Stroke Audit, benchmarked against international best practice, covering acute and non-acute care, and including structure, process, and outcome indicators. In Phase 1, a minimum dataset for acute care will be identified, based on a scoping review of international practice and available guidelines and recommendations. Phase 2 will involve identifying a non-acute core dataset and an outcomes dataset, based on a scoping review of international practice, stakeholder engagement using qualitative approaches and systematic review of outcome measures. In Phase 3, a review of resourcing and data collection procedures used in stroke audit internationally, and local stakeholder engagement, will be used to produce an implementation strategy for data collection. The design will incorporate a continuous cycle of feedback and collaboration with the INAS knowledge users, ensuring that the knowledge produced aligns with the requirements of the emerging audit. This highly relevant and engaged applied partnership will ensure immediate translation of research findings to national data collection procedures. Resulting data will be the “gold standard” for evaluating stroke care in Ireland and informing policy, quality improvement initiatives, and health service delivery in stroke care across the trajectory of care, from hyper-acute care, through rehabilitation, to return to the community.

This was a scoping review of the experiences of people with inherited cardiac conditions and congenital heart disease and their families. The Irish Heart Foundation is trying to investigate the issues which these individuals and their families might face throughout the life course. It is hoped that this scoping review will highlight current knowledge, inform potential future studies and also inform the supports provided by the IHF to people with inherited cardiac conditions and their families. As stated, the aim of this report was to explore the experience of individuals with inherited cardiac conditions and their families throughout the life course. Due to the very limited literature available on inherited cardiac conditions (Part I), this report also explored the broader area of congenital heart disease (Part II), which has a lot more literature available. Part I of this report therefore identifies more specific detail in relation to common cardiac conditions which are inherited while Part II provides a summary of the (larger) literature available on congenital heart disease which includes inherited (Brugada syndrome, Long QT Syndrome and Progressive Cardiac Conduction Defect) and other cardiac conditions (i.e. not all congenital heart disease is inherited). Some of the main themes which emerged as important in the literature were: Genetic testing and screening of family members, transition for younger patients, exercise/physical activity, stress and psychological adjustment of individual and their family, feeling normal, education concerning contraception and reproduction including genetic counselling, insurance and employment. There is virtually no Irish research on inherited cardiac conditions and congenital heart disease and the literature on inherited cardiac conditions is in general limited. Many areas of interest in relation to the social consequences, psychological experiences and quality of life associated with inherited cardiac conditions could not be addressed by this review as they simply have not yet been addressed in the literature itself. These knowledge gaps highlight the need for further research in this area. Research in this area might also be limited due to the sometimes invisible nature of these conditions. Not all inherited cardiac conditions are apparent from birth and in some cases the first symptom can actually be sudden death (1). In other cases a condition may go undiagnosed until a relative experiences symptoms or is lost to sudden cardiac death and it is only then that diagnosis is made following screening. Therefore for some, living with inherited cardiac conditions does not affect their lives at all in that they are unaware they have it. The common inherited cardiac conditions included are also quite different and therefore studies tend to look at each individually rather than exploring the experiences of individuals with inherited cardiac conditions as a whole. The exception to this is individuals who have received implantable cardioverter defibrillators. These people are sometimes looked at as a group and therefore different inherited cardiac conditions can sometimes be combined in these studies.

Communicating health information is a core skill required of all health care professionals. However, the ability of the recipient to understand the information provided – health literacy – is critical (Baker, 2006), yet receives relatively less attention in health professional teaching and training. The most commonly used method of communicating health information to patients and the general public is through use of patient information leaflets (PILs) (Pander Maat and Lentz, 2010). It is vital that these are designed in an optimal manner, taking at least three key principles into account: 1.They should have a low reading age, ensuring that the average reader can read and comprehend PIL content (Williamson and Martin, 2010). 2.PILs should utilise theories of health behaviour to maximise their motivational effects and provide practical assistance to the reader to adhere to the PIL’s recommendations (e.g. Armitage and Conner, 2000). 3.They should be accurate, contain enough detail, and not be biased by companies who sponsor the information (Charnock et al., 1999).

Hepatitis C is a relatively common blood-borne infectious disease. It has been estimated that 3% of the world���s population is infected. Hepatitis C accounts for about 20% of cases of acute hepatitis and 70% of cases of chronic hepatitis. Its importance is that it is a major cause of cirrhosis and hepatocellular cancer1. End-stage liver disease secondary to hepatitis C virus infection is main reason for liver transplantation. Following the discovery in February 1994 that anti-D immunoglobulin manufactured by the Irish Blood Transfusion Service Board was infected with hepatitis C, a number of screening programmes were put in place to identify those persons who had been infected, either directly or indirectly. It is estimated that about 1,600 persons have been infected with hepatitis C through the administration of blood and blood products in the Republic of Ireland. Acute hospital services for persons diagnosed positive for hepatitis C were put in place in 1994 in specialist hepatology (liver) units at six designated hospitals: Beaumont Hospital, the Mater Hospital, St Vincent���s Hospital, Elm Park, and St James���s Hospital in Dublin, Cork University Hospital, and University College Hospital in Galway. More recently, St Luke���s Hospital in Kilkenny has been included in the list of hospitals funded to provide specialist hepatology services. These services, provided under the Health Act (1970), are free of charge and include access to both in-patient and out-patient treatment as required. On 23 September 1996, the Health (Amendment) Act (1996) came into effect. This legislation provided statutory entitlement to a range of primary health care services, free of charge, to persons who have contracted hepatitis C from the receipt of a blood product or blood transfusion. The services provided include general practitioner services, medicines, home nursing services, home support services, dental, opthalmic, and aural services, as well as counselling services. At the request of the then Minister for Health, each health board appointed a liaison officer to ensure the efficient delivery of services under the Act, and to serve as a contact point for individuals and various interest groups whose members can avail of services under the Act. A Health Care Package for secondary services was also agreed between Positive Action and the Department of Health and Children in 1995. This covered entitlements to hospital treatments and sought to ensure sufficient funding, staffing, and facilities to provide high quality and appropriate secondary care services to those requiring them as a consequence of hepatitis C.

Stroke is the third leading cause of death and disability worldwide. It constitutes a formidable burden of disability for patients, their families, health professionals and the wider community. It combines aspects of both acute and chronic disease, and there is increasing evidence that those affected by stroke can benefit to a very significant extent from organised stroke care throughout the course of the illness. Delivering this care requires a unique combination of skills, drawing on neurosciences, cardiovascular medicine, general medicine, the science of ageing, rehabilitation, vascular surgery, and public health. Local and timely evidence on the service performance is essential to assess quality of care and to improve services. This has not been available to date in Ireland. The aim of this project was to conduct a national audit of stroke care in hospital and the community in the Republic of Ireland. This was achieved by completing six separate surveys and by drawing conclusions based on complementary information across the studies. The six surveys are described next. Where possible, audit systems used in the UK’s Sentinel audit were used to provide an opportunity for comparison of relative, as well as absolute, levels of achievement of recommended standards of care.