Partnering with survivors & families to determine research priorities for adult out-of-hospital cardiac arrest: A James Lind Alliance Priority Setting Partnership

Abstract

Background Research priority setting in health care has historically been done by expert health care providers and researchers and has not involved patients, family or the public. Survivors & family members have been particularly absent from this process in the field of resuscitation research and specifically adult out of hospital cardiac arrest (OHCA). As such, we sought to conduct a priority setting exercise in partnership with survivors, lay responders and their families in order to ensure that their priorities were visible. We partnered with the James Lind Alliance (UK) and used their commonly used consensus methodology for Public Priority Setting Partnerships (PSPs) to identify research priorities that reflected the perspectives of all stakeholders. Methods We used two rounds of public and health care professional surveys to create the initial priority lists. The initial survey collected open-ended questions while the second round consolidated the list of initial questions into a refined list for prioritization. This was done by reviewing existing evidence and thematic categorization by the multi-disciplinary steering committee. An in-person consensus workshop was conducted to come to consensus on the top ten priorities from all perspectives. The McMaster PPEET tool was used to measure engagement. Results The initial survey yielded more than 425 responses and 1450 “questions” from survivors and family members (18%), lay responders, health care providers and others. The second survey asked participants to rank a short list of 125 questions. The final top 25 questions were brought to the in-person meeting, and a top ten were selected through the JLA consensus process. The final list of top ten questions included how to improve the rate of lay responder CPR, what interventions used at the scene of an arrest can improve resuscitation and survival, how survival can be improved in rural areas of Canada, what resuscitation medications are most effective, what care patient’s family members need, what post-discharge support is needed for survivors, how communication should work for everyone involved with a cardiac arrest, what factors best predict neurologically intact survival, whether biomarkers/genetic tests are effective in predicting OHCA and more research on the short and long-term psycho-social impacts of OHCA on survivors. The PPEET showed overwhelmingly positive results for the patient and family engagement experience during the final workshop. Conclusions This inclusive research priority setting provides essential information for those doing resuscitation research internationally. The results provide a guide for priority areas of research and should drive our community to focus on questions that matter to survivors and their families in our work. In particular the Canadian Resuscitation Outcomes Consortium will be incorporating the top ten list into its strategic plan for the future.

Family & bystander experiences of emergency ambulance services care: a scoping review

“…(1989) [ 29 ] USA To describe the attitudes & experiences of family members with respect to death determination in the home for terminally ill patients 53 family members who experienced death determination of terminally ill patients in the home Mixed methods, mailed survey consisting of set & free answer sections There is a large variety of practices in terms of emergency medical services response to death determination of terminally ill patients in the home. Common feelings the family experience at this time are sadness, relief, & anger 2, 3, 5 Dainty et al, (2021) [ 30 ] Canada Partnering with survivors & families to determine research priorities for adult out-of-hospital cardiac arrests A diverse group with OHCA experiences including survivors, family members, health care professionals, & researchers Mixed methods, survey & focus groups Care required for families, bystanders & patients was identified as a top research priority. Post-event support was highlighted as important 5 De Stefano et al, (2016) [ 31 ] France To understand family members’ experiences during CPR 30 family members who had family members die during an OHCA Qualitative, phone interviews Family presence during OHCA can help to ameliorate the pain of the death, through the feeling of having helped to support the patient during the passage from life to death & of having participated in this important moment 2, 3, 4, 5 Delbridge et al, (1996) [ 32 ] USA To determine whether family members accept field termination of unsuccessful out-of-hospital cardiac arrest resuscitation ‘Closest Family member’ of 42 unsuccessful resuscitations terminated out-of-hospital ( n = 25) & in ED ( n = 17) Quantitative prospective cohort study, structured interviews Results suggest that family members accept termination of unsuccessful cardiac arrest resuscitations in the field & ED equally well.…”

Diverse stakeholder engagement at the heart of co-designing cardiac arrest care

“…People affected by SCA show high rates of interest in inclusion in cardiac arrest research. 14 Experiential sharing and creating initiatives to improve SCA outcomes may be a positive method of deriving meaning from a traumatic event, in line with the philosophy of Viktor Frankl that “suffering ceases to be suffering at the moment it finds a meaning.” 15 Importantly, in SCA there are still large evidence gaps and systematic processes that can strongly benefit from community identification, promotion, and advocacy ( Figure 3 ). 16 , 17 In a condition with 90% mortality, there is such self-evident scope for improvement that there is real benefit from the opting-in of willing “experts with experience” of SCA to share their priorities and drive new projects.…”

British Cardiovascular Intervention Society Consensus Position Statement on Out-of-hospital Cardiac Arrest 2: Post-discharge Rehabilitation

“…Nevertheless, identification of patients who develop cognitive impairment and/or affective/psychological disorders after cardiac arrest, the cost to patients and co-survivors of surviving a cardiac arrest and which treatments might promote recovery have all been reported as key gaps in current knowledge. [ 10 , 13 ]…”