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Quality of Life in Survivors of Out of Hospital Cardiac Arrest: What is the Best Outcome Measure?

Funding body/stream (programme name)

NIHR - Doctoral Research Fellowship

Chief investigator

Mr Valentino Oriolo

Institution

University Hospitals Bristol NHS Foundation Trust

Start date

1st March 2014 for 5 years

Amount

£160284

Summary

Patients who survive out of hospital cardiac arrest may have a significantly impaired quality of life (QoL). A literature review has highlighted the need for further research. Prior to hospital discharge patients will be approached to obtain verbal consent to contact them after six months. During this visit a verbal explanation will be given and written materials will be left. The patient will be contacted by phone to confirm their agreement to proceed with a second appointment. Written consent will be obtained and the participant will take part in a semi-structured interview discussing QoL tools, and preferred methods of administration.

Impact

60,000 people suffer out of hospital cardiac arrest (OHCA) in the UK each year, with resuscitation attempted in less than half, and less than10% surviving to hospital discharge. Recently available figures also demonstrate substantial variability throughout England in both the frequency with which return of spontaneous circulation (ROSC) is achieved, and long-term survival. Even in those patients achieving ROSC, the proportion surviving to hospital discharge remains disappointingly low.

The NHS and societal costs associated with the hospital and subsequent care of OHCA patients are substantial, as they usually require specialised levels of care and may leave hospital with an impaired quality of life. Recent advances in the management of OHCA following ROSC have demonstrated improvements in patient survival, but with significant impact on the associated health and social care costs.

This programme of research aims to identify the most effective way to assess quality of life (QoL) in patients suffering OHCA. To date there is no evidence evaluating the potential health economic burden on society in patient with poor QoL following OHCA. Previous research projects have attempted to measure this; however, all reviewed literature acknowledges that patient with neurocognitive impairment were not included in their surveys.

This implies that a true population group following with this condition has never been investigated.

Additionally, by retrospectively analysing patient data, the project will be able to identify potential factors affecting neurological outcome. This is highly relevant to the priorities and needs of the NHS, expressed in the NHS operating framework (Department of Health, 2012); 'NHS organisations should continue to support clinical and research strategies aimed at reducing mortality from cardiovascular disease…'

 

Patient and Public Involvement

From the outset the project has had full patient and public engagement. A survivor of out of hospital cardiac arrest and his wife have attended preliminary meetings. The Patient spoke powerfully of his experiences at a regional seminar on out of hospital cardiac arrest (OHCA) which took place in January 2012 and was attended by more than 100 clinicians, commissioners and managers. This account has been subsequently revised for publication.

The patient and his wife will help to shape all research documents, with full input into meetings; clearly articulating the patient and carer's view of the entire patient pathway.

A lay research group has also been established to support this project. Because cardiac arrest can occur suddenly in any individual it has not be necessary to have experience of OHCA in order to join the lay group: indeed, a range of views is required to ensure that the subject is considered from all societal perspectives. The lay group will meet regularly and will consider all aspects of the research programme, and associated documentation, and will be invited to provide feedback and input, both in general and in relation to specific questions and issues.

The patients and public partners have been instrumental in helping the applicant think about things from a patient perspective. Their involvement represents a valuable contribution to ensuring that the research is focused on patient benefit and that the most effective and efficient use is made of the resources involved in undertaking the research project.

Future involvement of the patient and public will include commenting on the patient information leaflet and recruitment letter as well as on the patient questionnaire design. It is hoped that this will improve the quality of the research by making the language and content of the written information provided to patients more appropriate and accessible therefore allowing people to make informed choices regarding participation and hopefully maximising recruitment to the study.

General information regarding the work of the Cardiology Department and a research terms glossary have been provided to the partners. Informal training session on the subject of research and cardiovascular disease will give them the necessary understanding to comment on the research proposal. The partners will attend future training sessions provided by People In Research South West.

Links to further information

http://public.ukcrn.org.uk/search/StudyDetail.aspx?StudyID=17521