University of Colorado
Funding: This study was funded by the National Center for Advancing Translational Sciences/Colorado Clinical and Translational Science Awards Grant Number TL1 TR002533
Study details: This is a mixed-methods survey study completed by survivor and caregiver members of SCAF.
- We sought to understand how patient-provider relationship factors (i.e., patient-provider communication, patient readiness for discharge, and illness perceptions) impact quality of life in survivors and caregivers.
- We also sought to understand how individual psychological factors (i.e., posttraumatic stress, anxiety, depression symptoms) impact quality of life in survivors and caregivers.
- 169 survivors completed the survey, with an average of 5 years post-event.
- 53 caregivers completed the survey, with an average of 3.5 years since their loved one’s event.
- 15 survivors participated in interviews about their post-arrest experience.
Presciutti, A., Newman, M.M., Sawyer, K., Agarwal, S., & Perman, S.M. (2021). Gaps in provision of cognitive and psychological resources in cardiac arrest survivors with good neurologic recovery. Therapeutic Hypothermia and Temperature Management. Published online ahead of print. doi:10.1089/ther.2021.0003.
- This study found that there are significant gaps in provision of cognitive and psychological resources in cardiac arrest survivors.
- A total of 73.1% (n = 122) survivors reported experiencing cognitive symptoms and 67.1% (n = 112) psychological symptoms since their cardiac arrest. When compared to these two proportions, provision of resources was significantly lower in all three metrics: (1) fewer discussions with providers about potential for developing cognitive symptoms (31%) and psychological symptoms (26.3%), (2) fewer neurologist appointments scheduled (8.4%) and psychologist appointments scheduled (4.8%), and (3) fewer referrals to mental health (6%).
Presciutti, A., Newman, M.M., Grigsby, J., Vranceanu, A.M., Shaffer, J.A., & Perman, S.M. (2021). Associations between posttraumatic stress symptoms and quality of life in cardiac arrest survivors and informal caregivers: A pilot survey study. Resuscitation Plus, 5, 100085. doi: 10.1016/j.resplu.2021.100085.
- In this study, greater posttraumatic stress symptoms (PTS) were associated with worse quality of life in both cardiac arrest survivors and informal caregivers.
- 1 in 4 cardiac arrest survivors showed significant PTS
- 1 in 3 informal caregivers showed significant PTS
Presciutti, A., Newman, M.M., Vranceanu, A.M., Shaffer, J.A., & Perman, S.M. (2020). Associations between depression and anxiety with quality of life in cardiac arrest survivors with good neurologic recovery and informal caregivers of cardiac arrest survivors. Journal of Affective Disorders Reports, 2, 100046.doi:10.1016/j.jadr.2020.100046.
- In this study, depression and anxiety, not functional impairments or memory problems, were the strongest predictors of quality of life.
- About 1 in 5 cardiac arrest survivors and informal caregivers showed significant depression
- Nearly 1 in 3 cardiac arrest survivors and over 1 in 3 caregivers showed significant anxiety
Presciutti, A., Shaffer, J.A., Newman, M.M., & Perman, S.M. (2020). Modifiable provider-patient relationship factors and illness perceptions are associated with quality of life in survivors of cardiac arrest with good neurologic recovery. Resuscitation Plus, 3, 100008. doi: 10.1016/j.resplu.2020.100008.
- Survivors that have threatening illness perceptions are more likely to have worse quality of life.
- Survivors that report poor provider-patient communication are more likely to have worse quality of life.
- Survivors that report not having been ready for hospital discharge are more likely to have worse quality of life.
Presciutti, A., Greenberg, J., Lester, E., Newman, M.M., Elmer, J., Shaffer, J.A., Vranceanu, A.M., & Perman, S.M. (2021, November). Mindfulness is inversely associated with psychological symptoms in long-term cardiac arrest survivors. Poster to be presented at the American Heart Association Resuscitation Science Symposium, Boston, MA.
- In this study, we found that cardiac arrest survivors who practice more mindfulness have fewer psychological symptoms.
Presciutti, A., Anbarasan, D., Sumner, J.A., Grigsby, J., Vranceanu, A.M., Newman, M.M., Perman, S.M., & Shaffer J.A. (2021, April). Cardiac arrest survivors experience posttraumatic stress symptoms differently from informal caregivers of cardiac arrest survivors. Poster presented at the annual meeting and scientific sessions of the Society of Behavioral Medicine (virtual meeting).
- In this study, we found that cardiac arrest survivors experience PTS differently than informal caregivers.
- Survivors experience more negative alterations in emotions and thoughts compared to informal caregivers.
- Informal caregivers experience more re-experiencing and avoidance symptoms compared to survivors.
Presciutti, A., Perman, S.M., Newman, M.M., & Shaffer, J.A. (2020, November). Illness perceptions and readiness for discharge are associated with psychological symptoms in cardiac arrest survivors with good neurologic recovery. Poster presented at the American Heart Association Resuscitation Science Symposium (virtual meeting).
- In this study, cardiac arrest survivors with more threatening illness perceptions and who reported lower readiness for discharge were more likely to have greater psychological symptoms.
Presciutti, A., Newman, M.M., Vranceanu, A.M., Shaffer, J.A., & Perman, S.M. (2020, November). Posttraumatic stress symptoms are associated with quality of life in both cardiac arrest survivors with good neurologic recovery and caregivers. Poster presented at the American Heart Association Resuscitation Science Symposium (virtual meeting).
Presciutti, A., Vranceanu, A.M., Newman, M.M., Shaffer, J.A., & Perman, S.M. (2020, November). Associations between specific PTSD symptoms and QoL in cardiac arrest survivors and informal caregivers. Poster presented at the Osher Center for Integrative Medicine at Harvard Medical School Network Forum, (virtual meeting).
- In cardiac arrest survivors, negative alterations in emotions and thoughts and hyperarousal symptoms were the PTS symptom clusters most strongly associated with lower quality of life.
- In informal caregivers, negative alterations in emotions and thoughts was the PTS symptom cluster most strongly associated with lower quality of life.
Presciutti, A., Shaffer, J.A., Newman, M.M., & Perman, S.M. (2020, April). Poor provider-patient communication, lack of readiness for discharge, and perceived illness threat are associated with quality of life after survival from cardiac arrest. Poster accepted for presentation at the annual meeting of the Association for Clinical and Translational Science, (meeting canceled).
Surviving Sudden Cardiac Arrest: A Pilot Qualitative Survey Study of Survivors
Life after survival from cardiac arrest is fraught with challenges for patients and loved ones alike, according to newly published research conducted among members of the Sudden Cardiac Arrest Foundation’s online community, the Sudden Cardiac Arrest Network.
While contemporary research among survivors has focused on functional abilities and cognitive or neuropsychiatric measures, this study sought to identify themes unique and important to cardiac arrest survivors and their family members and friends, so that results could serve as a basis for future patient-centered interventions and resources.
“Understanding survivors’ psychosocial perceptions of life in the aftermath of cardiac arrest is the first step to development of interventions and resources that meet the needs of survivors, their loved ones and the larger support system,” said Kelly Sawyer, MD, MS, lead author from the Beaumont Health System in Royal Oak, Michigan. Dr. Sawyer, an emergency physician, is also a survivor of cardiac arrest.
The study consisted of an Internet-based survey distributed to 1,060 survivors and family members and friends in the community, using discrete multiple choice questions and open-ended questions. Independent researchers conducted inductive thematic analyses using accepted qualitative research methods. There was an 18.5% response rate from 157 survivors and 39 family members and friends.
Survivors responding to the survey had the following characteristics:
- Ages ranged from 18-81, with the majority of respondents (60%) between the ages of 41-60.
- Most events occurred in public places (57%).
- 35% of patients received therapeutic hypothermia.
- 69% of patients received implantable cardioverter defibrillator (ICD) therapy.
- 95% of patients were discharged home.
- Most survivors (69%) were able to return to work or school with no limitations; another 25% were able to return with limitations.
- Most survivors (75%) had memory loss near the time of the event.
- Many survivors (22%) continue to have memory issues.
- The biggest challenges for survivors are anxiety, memory loss, re-establishing a routine, depression, driving, work/school, and financial concerns.
Survey results showed that discharge counseling was primarily provided by doctors (65%) and nurses (24%). However counseling was largely unhelpful. The most common bit of advice (54%) was to “Take it easy.” Many survivors (19%) said they received no counseling.
Researchers uncovered several global themes conveyed by survivors, including:
- The significance of others
- The idea that “We are in this together”
- The perception that the number of feelings is overwhelming
- The need to find “a new normal.”
Major themes for survivors include the desire to locate and share with others, subculture identification (i.e., cardiac arrest is not the same as a heart attack), mental health issues, financial concerns, lack of preparation for emotional and cognitive issues, and changed relationships.
Family members and friends identified several global themes including:
- Lack of information at discharge
- Lack of mental health resources
- Fear it could happen again.
Major themes for family members and friends included memory loss around the time of the event and afterwards, the fact that no information was provided at discharge, the fact that follow-up appointments centered on cardiology but did not address psychosocial issues, the idea that peer support would be helpful, and the need to know what to expect going forward.
While study respondents represent a self-selected sample of people with Internet access and functional ability to complete the survey and may not be representative of the population at large, the research serves to inform clinicians and researchers on the complexity of survival and themes that are important to survivors and their loved ones.
This qualitative pilot study takes a necessary step in assessing how patients experience life after survival and also provides insights into the experiences of loved ones. There is an apparent need for support networks and social media groups with expertise from people who are trained in supportive care for others.
Study recommendations include developing a system for discharge counseling that includes follow-up re-evaluation and reiteration of instructions, and expectations and resources for survivors and loved ones, including options for peer support.
Read journal article here.