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Establishing the Australian Resuscitation Outcomes Consortium (Aus-ROC) Epistry
108
Abstracts / Resuscitation 96S (2015) 43–157
AP157
AP158
Establishing the Australian Resuscitation Outcomes Consortium (Aus-ROC) Epistry
Exploring the lived experience of surviving an out of hospital cardiac arrest: Understanding what health outcomes really matter to patients
Ben Beck 1,∗ , Janet Bray 1 , Karen Smith 2 , Tony Walker 2 , Cindy Hein 3 , Melanie Thorrowgood 4 , Hugh Grantham 3 , Keith Driscoll 4 , Anthony Smith 5 , Tony Smith 6 , Bridget Dicker 6 , Andy Swain 7 , Peter Cameron 1 , Judith Finn 8 1
Monash University, Melbourne, Australia Ambulance Victoria, Melbourne, Australia 3 Flinders University, Adelaide, Australia 4 SA Ambulance Service, Adelaide, Australia 5 St John Ambulance Western Australia, Perth, Australia 6 St John Ambulance New Zealand, Auckland, New Zealand 7 Wellington Free Ambulance, Wellington, New Zealand 8 Curtin University, Perth, Australia 2
Purpose of the study: Regional out-of-hospital cardiac arrest (OHCA) registries have been established with the aim of understanding and improving OHCA outcomes. We aim to describe the rationale, development and methodology of the Australian Resuscitation Outcomes Consortium (Aus-ROC) OHCA Epidemiological registry (Epistry). Materials and methods: The Aus-ROC Epistry is designed as a retrospective population-based cohort registry for Australia and New Zealand. Currently, five established OHCA registries contribute to the Aus-ROC Epistry from Emergency Medical Services (EMS) in Australia (Ambulance Victoria, SA Ambulance Service and St John Ambulance Western Australia) and New Zealand (St John Ambulance New Zealand and Wellington Free Ambulance). Results: Approximately 13.4 million persons are served by the five participating EMS services, representing approximately 40% of the Australian population and 100% of the New Zealand population. Data across all participating registries is collected using Utsteinstyle definitions. Selected data items incorporated into the Epistry include information on demographics, arrest features, response times, treatment and patient outcomes. Variables were identified as core or optional by consensus within participating Aus-ROC EMS agencies. The Aus-ROC Epistry is overseen by a Management Committee who reports to the Aus-ROC Steering Committee. The primary outcome measure of the Epistry is ‘survival to hospital’. Conclusions: The scope of the Aus-ROC Epistry will provide insight into: (1) temporal changes and appropriate risk adjusted statistics on incidence and outcome of OHCA, (2) an understanding of regional and treatment variation in OHCA and (3) the impact of changes in clinical guidelines and clinical trials.
Laura Whitehead 1,∗ , Gavin Perkins 1 , Deborah Biggerstaff 1 , Keith Couper 2 , Kirstie Haywood 3 1
University of Warwick, Coventry, UK Heart of England NHS Foundation Trust, Birmingham, UK 3 Royal College of Nursing Research Institute, Warwick Medical School, Coventry, UK 2
Background: Few studies have explored what really matters to the survivors of cardiac arrest. A recent review has highlighted the failure of cardiac arrest randomised controlled trials to include the patients’ perspective in assessment. Moreover, patient outcomes following hospital discharge were rarely captured. This study aims to explore the lived experience of cardiac arrest survivors and their partners, highlighting health outcomes, beyond survival, that really matter to patients. Methods: Semi-structured interviews were conducted with survivors following an out of hospital cardiac arrest, 3–12 months after hospital discharge. Participants were recruited from an UK regional hospital trust. Where possible, patients’ partners were also interviewed to gain further understanding of patients’ experiences. Inclusion criteria: aged >18 years; no major cognitive impairment; nor illness. An interpretative phenomenological analysis approach was adopted. Results: A convenience sample of eight patients (mean 62.8 years, range 41–79; n = 5 male) and three of their partners were interviewed separately at a mean time of 6.25 months following hospital discharge. Analysis highlighted an overarching theme of ‘disruption to normality’; while returning to their pre-arrest level of activity being important for all patients. However, life was disrupted across a number of core health domains including: physical functioning, emotional well-being, social well-being and participation, and the impact on others. Different approaches were displayed by patients when coming to terms with these changes and moving towards a ‘new normal’. Discussion: This study improves our understanding of the lived experience of cardiac arrest survivors, highlighting which health outcomes are important for patients throughout their recovery. Whilst an individual’s pre-arrest status is a gold standard against which they judge their current health status, the impact of cardiac arrest is significant and wide-ranging. This research provides a patient-derived conceptual framework to inform the development of a core outcome set for future cardiac arrest clinical trials and a specific patient reported outcome measure. http://dx.doi.org/10.1016/j.resuscitation.2015.09.255
http://dx.doi.org/10.1016/j.resuscitation.2015.09.254
Abstracts / Resuscitation 96S (2015) 43–157
AP157
AP158
Establishing the Australian Resuscitation Outcomes Consortium (Aus-ROC) Epistry
Exploring the lived experience of surviving an out of hospital cardiac arrest: Understanding what health outcomes really matter to patients
Ben Beck 1,∗ , Janet Bray 1 , Karen Smith 2 , Tony Walker 2 , Cindy Hein 3 , Melanie Thorrowgood 4 , Hugh Grantham 3 , Keith Driscoll 4 , Anthony Smith 5 , Tony Smith 6 , Bridget Dicker 6 , Andy Swain 7 , Peter Cameron 1 , Judith Finn 8 1
Monash University, Melbourne, Australia Ambulance Victoria, Melbourne, Australia 3 Flinders University, Adelaide, Australia 4 SA Ambulance Service, Adelaide, Australia 5 St John Ambulance Western Australia, Perth, Australia 6 St John Ambulance New Zealand, Auckland, New Zealand 7 Wellington Free Ambulance, Wellington, New Zealand 8 Curtin University, Perth, Australia 2
Purpose of the study: Regional out-of-hospital cardiac arrest (OHCA) registries have been established with the aim of understanding and improving OHCA outcomes. We aim to describe the rationale, development and methodology of the Australian Resuscitation Outcomes Consortium (Aus-ROC) OHCA Epidemiological registry (Epistry). Materials and methods: The Aus-ROC Epistry is designed as a retrospective population-based cohort registry for Australia and New Zealand. Currently, five established OHCA registries contribute to the Aus-ROC Epistry from Emergency Medical Services (EMS) in Australia (Ambulance Victoria, SA Ambulance Service and St John Ambulance Western Australia) and New Zealand (St John Ambulance New Zealand and Wellington Free Ambulance). Results: Approximately 13.4 million persons are served by the five participating EMS services, representing approximately 40% of the Australian population and 100% of the New Zealand population. Data across all participating registries is collected using Utsteinstyle definitions. Selected data items incorporated into the Epistry include information on demographics, arrest features, response times, treatment and patient outcomes. Variables were identified as core or optional by consensus within participating Aus-ROC EMS agencies. The Aus-ROC Epistry is overseen by a Management Committee who reports to the Aus-ROC Steering Committee. The primary outcome measure of the Epistry is ‘survival to hospital’. Conclusions: The scope of the Aus-ROC Epistry will provide insight into: (1) temporal changes and appropriate risk adjusted statistics on incidence and outcome of OHCA, (2) an understanding of regional and treatment variation in OHCA and (3) the impact of changes in clinical guidelines and clinical trials.
Laura Whitehead 1,∗ , Gavin Perkins 1 , Deborah Biggerstaff 1 , Keith Couper 2 , Kirstie Haywood 3 1
University of Warwick, Coventry, UK Heart of England NHS Foundation Trust, Birmingham, UK 3 Royal College of Nursing Research Institute, Warwick Medical School, Coventry, UK 2
Background: Few studies have explored what really matters to the survivors of cardiac arrest. A recent review has highlighted the failure of cardiac arrest randomised controlled trials to include the patients’ perspective in assessment. Moreover, patient outcomes following hospital discharge were rarely captured. This study aims to explore the lived experience of cardiac arrest survivors and their partners, highlighting health outcomes, beyond survival, that really matter to patients. Methods: Semi-structured interviews were conducted with survivors following an out of hospital cardiac arrest, 3–12 months after hospital discharge. Participants were recruited from an UK regional hospital trust. Where possible, patients’ partners were also interviewed to gain further understanding of patients’ experiences. Inclusion criteria: aged >18 years; no major cognitive impairment; nor illness. An interpretative phenomenological analysis approach was adopted. Results: A convenience sample of eight patients (mean 62.8 years, range 41–79; n = 5 male) and three of their partners were interviewed separately at a mean time of 6.25 months following hospital discharge. Analysis highlighted an overarching theme of ‘disruption to normality’; while returning to their pre-arrest level of activity being important for all patients. However, life was disrupted across a number of core health domains including: physical functioning, emotional well-being, social well-being and participation, and the impact on others. Different approaches were displayed by patients when coming to terms with these changes and moving towards a ‘new normal’. Discussion: This study improves our understanding of the lived experience of cardiac arrest survivors, highlighting which health outcomes are important for patients throughout their recovery. Whilst an individual’s pre-arrest status is a gold standard against which they judge their current health status, the impact of cardiac arrest is significant and wide-ranging. This research provides a patient-derived conceptual framework to inform the development of a core outcome set for future cardiac arrest clinical trials and a specific patient reported outcome measure. http://dx.doi.org/10.1016/j.resuscitation.2015.09.255
http://dx.doi.org/10.1016/j.resuscitation.2015.09.254