scholarly journals Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Marieke A. R. Bak ◽  
Rens Veeken ◽  
Marieke T. Blom ◽  
Hanno L. Tan ◽  
Dick L. Willems
Keyword(s):  
Cardiac Arrest ◽  
Qualitative Interviews ◽  
Sudden Cardiac Arrest ◽  
Ethics Committees ◽  
Health Data ◽  
Observational Research ◽  
Proxy Consent ◽  
The European Union ◽  
Next Of Kin ◽  
Related Data

Abstract Background Consent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and health-related data for observational research. Methods We conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues. Results Sudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients’ data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives. Conclusions Sudden cardiac arrest patients’ donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants’ data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well.

Abstract 133: "I’m Not the Same Person....": Understanding Cardiac Arrest Survivorship and Long -Term Outcomes From the perspective of Survivors and Families

Circulation ◽  
2018 ◽  
Vol 138 (Suppl_2) ◽  
Author(s):  
Katie N Dainty ◽  
Bianca Seaton ◽  
Richard Verbeek
Keyword(s):  
Cardiac Arrest ◽  
Outcome Measures ◽  
Qualitative Interviews ◽  
Family Members ◽  
Sudden Cardiac Arrest ◽  
Memory Loss ◽  
Research And Practice ◽  
Qualitative Work ◽  
The Impact

Background: Of those victims that are discharged alive following sudden cardiac arrest (SCA), the five-year survival rate is upwards of 75%. However, the survivor experience of “living” and their quality of life after such a life-changing event can be quite variable. Unfortunately traditional outcome measures in the SCA literature make gross, snapshot assumptions about what constitutes a “good” outcome and rarely account for life after hospital discharge. The objective of this study was to understand the survivor and family/caregiver experience of life after SCA and what outcomes are important to them as “life goes on”. Methods: In-depth qualitative interviews were conducted with survivors and their families/caregivers at various stages of survival. Survivors and family members were interviewed together and separately. The interviews focused on concepts such as what their recovery journey was like, what long-term issues were most important to them and how we might implement measures of such concepts into more research and practice. Interviews were audio-taped, transcribed verbatim and analyzed by the authors using constant comparative thematic analysis techniques. Results: During in-depth interviews with more than 30 survivors and caregivers we heard that despite being a relatively high functioning group, their lives have been deeply affected by their cardiac arrest experience. They spoke about the importance of both psychologic and physical recovery and the influence of latent depression, anxiety, memory-loss, fatigue, infertility, changes in body image and relationships with loved ones. For some there have also been unique challenges with having an implanted cardiac defibrillator (ICD). Spouses/family members spoke about the caregiver burden, anxiety around their loved ones health and the impact of not having any sense of what to expect after discharge. Conclusions: The psycho-social type outcomes identified as very influential by survivors and families are almost entirely unmeasured in the resuscitation literature. This robust qualitative work gives us important insight that we hope to use to design more survivor-centred outcome measures for prospective use in research and practice. (*Abstract will be co-presented with an SCA survivor)

Kendo Protective Equipment Prevents Quick Access for Resuscitation During Sudden Cardiac Arrest: A Cross-Over Manikin Study

2020 ◽  
Vol 25 (4) ◽  
pp. 197-202
Author(s):  
Shota Tanaka ◽  
Hiroki Ueta ◽  
Ryo Sagisaka ◽  
Shuji Sakanashi ◽  
Takahiro Hara ◽  
...  
Keyword(s):  
Cardiac Arrest ◽  
Survival Rate ◽  
Cardiopulmonary Resuscitation ◽  
Chest Compression ◽  
Sudden Cardiac Arrest ◽  
Protective Equipment ◽  
Automated External Defibrillator ◽  
Related Data ◽  
External Defibrillator ◽  
Condition B

Protective equipment in sports can be a barrier to sudden cardiac arrest (SCA) treatment, but no Kendo-related data are available. In order to enhance the SCA survival rate, we aimed to determine whether Kendo protective equipment should be removed before or after an automated external defibrillator (AED) has arrived by measuring the quality and timeframe of cardiopulmonary resuscitation administration. Eighteen collegiate female Kendo players were instructed to treat the patient with SCA under two conditions: (a) equipment removal [ER] condition; (b) no equipment removal [NER] condition. Chest compression initiation was delayed during simulated cardiac arrest situations in Kendo, but the SCA quality was much better without protective equipment. When a layperson is only a nonhealthcare professional female, Kendo protective equipment becomes a barrier for quick access during SCA treatment of Kendo players.

scholarly journals Discovery of predictors of sudden cardiac arrest in diabetes: rationale and outline of the RESCUED (REcognition of Sudden Cardiac arrest vUlnErability in Diabetes) project

Open Heart ◽  
2021 ◽  
Vol 8 (1) ◽  
pp. e001554
Author(s):  
Laura H van Dongen ◽  
Peter P Harms ◽  
Mark Hoogendoorn ◽  
Dominic S Zimmerman ◽  
Elisabeth M Lodder ◽  
...  
Keyword(s):  
Cardiac Arrest ◽  
Prognostic Model ◽  
Early Recognition ◽  
Sudden Cardiac Arrest ◽  
Clinical Genetic ◽  
Innovative Strategy ◽  
Rare Variant Analysis ◽  
Increased Risk ◽  
Gp Care

IntroductionEarly recognition of individuals with increased risk of sudden cardiac arrest (SCA) remains challenging. SCA research so far has used data from cardiologist care, but missed most SCA victims, since they were only in general practitioner (GP) care prior to SCA. Studying individuals with type 2 diabetes (T2D) in GP care may help solve this problem, as they have increased risk for SCA, and rich clinical datasets, since they regularly visit their GP for check-up measurements. This information can be further enriched with extensive genetic and metabolic information.AimTo describe the study protocol of the REcognition of Sudden Cardiac arrest vUlnErability in Diabetes (RESCUED) project, which aims at identifying clinical, genetic and metabolic factors contributing to SCA risk in individuals with T2D, and to develop a prognostic model for the risk of SCA.MethodsThe RESCUED project combines data from dedicated SCA and T2D cohorts, and GP data, from the same region in the Netherlands. Clinical data, genetic data (common and rare variant analysis) and metabolic data (metabolomics) will be analysed (using classical analysis techniques and machine learning methods) and combined into a prognostic model for risk of SCA.ConclusionThe RESCUED project is designed to increase our ability at early recognition of elevated SCA risk through an innovative strategy of focusing on GP data and a multidimensional methodology including clinical, genetic and metabolic analyses.

scholarly journals Contacts to the healthcare system prior to out-of-hospital cardiac arrests

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
N Zylyftari ◽  
S.G Moller ◽  
M Wissenberg ◽  
F Folke ◽  
C.A Barcella ◽  
...  
Keyword(s):  
Cardiac Arrest ◽  
General Population ◽  
Healthcare System ◽  
Early Identification ◽  
Sudden Cardiac Arrest ◽  
Funding Source ◽  
Horizon 2020 ◽  
One Year ◽  
Public Grant ◽  
Hospital Cardiac Arrest

Abstract Background Patients who suffer a sudden out-of-hospital cardiac arrest (OHCA) may be preceded by warning symptoms and healthcare system contact. Though, is currently difficult early identification of sudden cardiac arrest patients. Purpose We aimed to examine contacts with the healthcare system up to two weeks and one year before OHCA. Methods OHCA patients were identified from the Danish Cardiac Arrest Registry (2001–2014). The pattern of healthcare contacts (with either general practitioner (GP) or hospital) within the year prior to OHCA of OHCA patients was compared with that of 9 sex- and age-matched controls from the background general population. Additionally, we evaluated characteristics of OHCA patients according to the type of healthcare contact (GP/hospital/both/no-contact) and the including characteristics of contacts, within two weeks prior their OHCA event. Results Out of 28,955 OHCA patients (median age of 72 (62–81) years and with 67% male) of presumed cardiac cause, 16,735 (57.8%) contacted the healthcare system (GP and hospital) within two weeks prior to OHCA. From one year before OHCA, the weekly percentages of contacts to GP were relatively constant (26%) until within 2 weeks prior to OHCA where they markedly increased (54%). In comparison, 14% of the general population contacted the GP during the same period (Figure). The weekly percentages of contacts with hospitals gradually increased in OHCA patients from 3.5% to 6.5% within 6 months, peaking at the second week (6.8%), prior to OHCA. In comparison, only 2% of the general population had a hospital contact in that period (Figure). Within 2 weeks of OHCA, patients contacted GP mainly by telephone (71.6%). Hospital diagnoses were heterogenous, where ischemic heart disease (8%) and heart failure (4.5%) were the most frequent. Conclusions There is an increase in healthcare contacts prior to “sudden” OHCA and overall, 54% of OHCA-patients had contacted GP within 2 weeks before the event. This could have implications for developing future strategies for early identification of patients prior to their cardiac arrest. Figure 1. The weekly percentages of contacts to GP (red) and hospital (blue) within one year before OHCA comparing the OHCA cases to the age- and sex-matched control population (N cases = 28,955; N controls = 260,595). Funding Acknowledgement Type of funding source: Public grant(s) – EU funding. Main funding source(s): European Union's Horizon 2020

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