Abstract
We aimed to elucidate gaps in the provision of cognitive and psychological resources in cardiac arrest survivors. We conducted an online survey study between October 29, 2019, and November 15, 2019 with cardiac arrest survivors and caregiver members of the Sudden Cardiac Arrest Foundation. We queried survivors as to whether they experienced cognitive or psychological symptoms since their cardiac arrest. Next, we queried both survivors and caregivers on the provision of resources through three metrics: (1) discussions with providers about potential cognitive or psychological symptoms, (2) neurologist or psychologist appointments scheduled by providers, and (3) mental health referrals by providers. We then ran Chi-square goodness-of-fit tests to compare the proportion of survivors and caregivers who reported resource provision (observed values) to the proportion of survivors who reported experiencing cognitive and psychological symptoms, respectively (expected values). We included responses from 167 survivors and 52 caregivers. 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%). Informal caregivers also reported significantly lower provision of resources in all three metrics, with the exception of discussions about developing cognitive symptoms. Our results suggest that there are discrepancies in the provision of cognitive and psychological resources in cardiac arrest survivors with good neurologic recovery. Systematic referral processes may be needed to standardize resource provision to consistently meet the pervasive cognitive and psychological needs of cardiac arrest survivors.
Keywords: cardiac arrest, survivorship, resource provision
Introduction
The American Heart Association (AHA) recently released a Scientific Statement highlighting that cardiac arrest survivors lack postdischarge resources (Sawyer et al., 2020), such as specialty referrals and discussions about the potential of experiencing “extracardiac challenges” such as cognitive and psychological symptoms (Sawyer et al., 2016). Indeed, prior studies have documented that cardiac arrest survivors experience many chronic cognitive and psychological symptoms (Moulaert et al., 2009; Wilder Schaaf et al., 2013; Presciutti et al., 2018); however, there continues to be an absence of standardized assessment and specialty referral to address these extracardiac challenges. As a result, both survivors and their caregivers must navigate a postdischarge landscape that often does not facilitate holistic recovery.
Cognitive and psychological symptoms remain underappreciated and problematic for the quality of postcardiac arrest survivorship. Indeed, one cohort of cardiac arrest survivors scored an average of nearly 2 standard deviations worse than the normative average on a brief cognitive assessment administered at hospital discharge (Presciutti et al., 2018). This poor performance is consistent with scores in patients with traumatic brain injury and dementia (Randolph et al., 1998; Lippa et al., 2013). At 6 months, over one-third of survivors continued to score below average (Presciutti et al., 2019). Psychological symptoms, in turn, have posed particular problems for survivorship. For example, in one prospective cohort of cardiac arrest survivors, psychological symptoms were the strongest predictors of negative subjective recovery at both hospital discharge and 6 months (Presciutti et al., 2018, 2019). Psychological symptoms have also been linked to adverse 1-year clinical outcomes (Agarwal et al., 2019; Presciutti et al., 2020b) and worse quality of life (Gamper et al., 2004; Moulaert et al., 2010; Presciutti et al., 2020a, 2021).
Many qualitative studies have discussed apparent “gaps” in provision of cognitive and psychological resources in cardiac arrest survivors (Sawyer et al., 2016; Bremer et al., 2019; Whitehead et al., 2020). For example, survivors and caregivers have reported feeling unprepared for cognitive and psychological challenges postarrest, have reported receiving insufficient information on what to expect postdischarge regarding these symptoms, and have reported receiving no mental health resources/referrals (Sawyer et al., 2016). Despite these qualitative findings, however, there has yet to be a quantitative estimation of the discrepancy between the cognitive and psychological care needed and the cognitive and psychological resources provided postarrest (i.e., gaps in provision of resources). In this study, we surveyed a convenience sample of survivors with good neurologic recovery and informal caregivers to better understand gaps in resource provision in this population. Specifically, we compared the proportion of survivors who experienced cognitive and psychological symptoms with the following metrics:
-
(1)
The proportion of survivors and caregivers who had discussions with providers about the possibility of experiencing cognitive and psychological symptoms.
-
(2)
The proportion of survivors who had neurologist and psychologist appointments scheduled by providers at hospital discharge.
-
(3)
The proportion of survivors who had referrals to mental health by providers.
Based on the known lack of standardized assessment and specialized referrals postarrest (Sawyer et al., 2020), we hypothesized that there would be significant discrepancies between resources needed and resources provided.
Materials and Methods
We conducted an open online survey study distributed between October 29, 2019 and November 15, 2019 among cardiac arrest survivors and informal caregivers of cardiac arrest survivors, who were registered as members of the Sudden Cardiac Arrest Foundation (SCAF). To that end, the cardiac arrest survivors included in this study had experienced a good degree of neurological recovery, as they were able to participate in an online support group and complete an online survey.
The SCAF is a nonprofit online organization based in Pittsburgh, Pennsylvania, United States, whose mission is to serve as an information clearinghouse and social marketing force to raise awareness about the prevention and treatment of sudden cardiac arrest. It offers an online social network, the SCA Network, for survivors, family members, and other advocates. SCAF regularly participates in research projects that contribute to its mission. People encounter SCAF through its website, https://www.sca-aware.org, bimonthly newsletters, social media channels, and outreach at national conferences. SCAF membership is free and “opt-in.”
We sent survey invitations through e-mail to a total of 1288 SCAF members. We sent two e-mail reminders for members who had not completed the survey after the initial invitation. A total of 219 members (167 survivors and 52 caregivers) provided sufficient data for inclusion in this analysis (17% survey completion rate). Survivors and caregivers completed the surveys independently, and thus, we did not collect paired dyadic data. The surveys were developed and conducted through REDCap, secure data capture software. The usability and technical functionality of the survey were tested by the study authors before fielding the questionnaire.
In terms of survey administration, the surveys were voluntary, and we offered no incentives. We did not randomize survey items or use adaptive questioning. All surveys were marked as complete or incomplete automatically by the REDCap server. Participants were able to review and change their answers before submitting their surveys. Cookies were not used to identify unique users; instead, we queried survey respondents to provide the first three letters of their first and last names as well as their email address to create a unique identification number. In cases of duplicate entries, we kept the most complete entry for analysis. For this study, we used only survey entries that contained complete data for the primary outcome measures in these analyses.
This study was approved by the local institutional review board; participants were informed of the approximate length of the survey, where data were stored, who the investigators were, the purpose of the study, and who consented to participation before beginning the survey.
Measures
Survivor characteristics
In this analysis, for survivors, we examined demographic variables (i.e., age at cardiac arrest, sex, income, race, and education). We also examined cardiac arrest characteristics (i.e., months since the initial cardiac arrest, comorbidities at the time of the arrest (which were then used to calculate the Charlson Comorbidity Index (Charlson et al., 1987)), provision of cooling therapy, arrest location, placement of an implantable cardioverter-defibrillator (ICD), the experience of ICD shocks, and discharge disposition. Finally, we collected zip code data, which we used to characterize the geographic distribution of survivors.
Informal caregiver characteristics
Informal caregivers (i.e., family and/or friends who provide instrumental and emotional support) (National Alliance for Caregiving, 2009) reported the same demographic variables as did survivors. They reported certain arrest characteristics describing the survivors for whom they care, including months since the initial arrest, and arrest location. Caregivers reported their relationships to the survivor as spousal or nonspousal. We collected zip code data to characterize the geographic distribution of caregivers.
Extracardiac symptoms
Survey questions addressed whether survivors had experienced cognitive and/or psychological symptoms since their arrest. Survivors and caregivers answered questions regarding daily memory problems since the arrest (Supplementary Data).
Provision of resources
Survey items regarding the provision of resources are provided in Supplementary Data. We captured the provision of resources through three metrics. First, survivors/caregivers answered whether they had any discussions with hospital providers regarding potential cognitive/psychological sequelae due to their cardiac arrest. Next, survivors/caregivers responded whether they had neurologist, speech therapy, brain injury specialist, and/or psychologist appointments scheduled by providers before discharge. Finally, survivors/caregivers indicated if they had received referrals by providers for a psychologist, psychiatrist, mental health counselor, and/or support group.
Awareness of extracardiac symptoms and understanding of cardiac arrest at discharge
We queried both survivors and caregivers on (1) their awareness of the possibility of experiencing cognitive, psychological, and physical symptoms at the time of hospital discharge and (2) their understanding of cardiac arrest at the time of hospital discharge. These items are provided as Supplementary Data.
Statistical analysis
First, we ran descriptive statistics to describe our sample in terms of demographic and cardiac arrest characteristics, extracardiac symptoms experienced, and provision of resources.
Next, we ran six sets of chi-square goodness of fit tests (three for survivors and three for caregivers) to compare the proportion of survivors who received cognitive and psychological resources (observed values) with the proportion of survivors who reported experiencing cognitive and psychological symptoms due to their cardiac arrest (expected values).
For comparisons concerning the provision of cognitive resources, we utilized an expected value of 73.1% (n = 122) based on the proportion of survivors who reported experiencing cognitive symptoms. For comparisons concerning the provision of psychological resources, we utilized an expected value of 67.1% (n = 112) based on the proportion of survivors who reported experiencing psychological symptoms.
For the first set of tests, we compared the observed values of survivors who reported having had a discussion with providers about potential cognitive and psychological symptoms, with the expected values of the proportion of survivors who experienced cognitive and psychological symptoms, respectively.
For the second set of tests, we first compared the observed value of survivors who had a neurologist appointment scheduled with the expected value of the proportion of survivors who experienced cognitive symptoms. To more sensitively capture cognitive resources provided, we then compared the observed value of survivors who had any of the following appointments scheduled: neurologist, speech therapist, brain specialist, or “other” appointment scheduled, with the expected value of the proportion of survivors who experienced cognitive symptoms. Finally, we compared the observed value of survivors who had a psychologist appointment scheduled with the expected value of the proportion of survivors who experienced psychological symptoms.
For the third set of tests, we compared the observed value of survivors who had received a provider referral to any mental health professional or support group with the expected value of the proportion of survivors who experienced psychological symptoms.
To mitigate the risk of committing a Type I error, we corrected for multiple tests using Bonferroni's correction.
We then conducted identical analyses based on caregiver responses, comparing resource provision according to caregivers (observed values) with the proportion of survivors who reported cognitive and psychological symptoms (expected values). We again corrected for multiple tests using Bonferroni's correction.
Finally, we conducted a sensitivity analysis to examine potential differences between responses on resource provision between survivors and caregivers. We ran Chi-square tests of independence between survivor responses and caregiver responses on each resource provision item.
Results
Demographic and participant characteristics are presented in Table 1. On average, the majority of survivors were middle aged, male, white, of high-income status, had at least a college degree, had low prearrest comorbidities, were more often out-of-hospital arrests, more often did not receive cooling therapy, experienced their arrest about 5 years ago, had an ICD placed, did not experience ICD shocks, and were discharged home with no services.
Table 1.
Demographic and Participant Characteristics Included in This Analysis
| Demographics | Survivors (n = 167) | Caregivers (n = 52) |
|---|---|---|
| Age at arrest, mean ± SD | 50.8 ± 11.7 | 48.7 ± 13.7 |
| Gender—female, % (n) | 49.7 (83) | 86.5 (45) |
| Race, % (n) | ||
| White | 95.8 (160) | 88.5 (46) |
| Non-white | 4.2 (7) | 11.5 (6) |
| Spousal caregiver, % (n) | 82.7 (43) | |
| Income, % (n) | ||
| <$50,000 | 18 (30) | 3.8 (2) |
| $50,000–$99,999 | 25.1 (42) | 36.5 (19) |
| >$99,999 | 53.9 (90) | 57.7 (30) |
| Education, % (n) | ||
| No college degree | 28.7 (48) | 30.8 (16) |
| College degree | 37.1 (62) | 38.5 (20) |
| Graduate degree | 34.1 (57) | 30.8 (16) |
| Cardiac arrest characteristics | ||
| Prearrest Charlson Comorbidity Index, median (IQR) | 1 (0–2) | |
| Out-of-hospital arrest, % (n) | 84.4 (141) | 92.3 (48) |
| Cooling therapy, % (n) | 41.3 (69) | |
| Months since arrest, mean (IQR) | 63.4 (26–91) | 43.2 (17–55) |
| ICD placed % (n) | 71.3 (119) | |
| ICD shocked % (n) | 24.6 (41) | |
| Discharge disposition, % (n) | ||
| Acute rehab or LTAC | 4.8 (8) | |
| Subacute rehab | 1.8 (3) | |
| Home with in-home services | 6.6 (11) | |
| Home with outpatient services | 16.8 (28) | |
| Home with no services | 70.1 (117) | |
| Unknown | 1.2 (2) | |
| Geographic region, % (n) | ||
| United States East | 18 (30) | 9.6 (5) |
| United States South | 34.1 (57) | 21.2 (11) |
| United States Midwest | 20.4 (34) | 28.8 (15) |
| United States West | 20.4 (34) | 34.6 (18) |
| Non-United States | 7.2 (12) | 5.8 (3) |
ICD, implantable cardioverter-defibrillator; IQR, interquartile range; LTAC, long-term acute care; SD, standard deviation.
On average, the majority of caregivers were middle aged, female, white, spousal caregivers, of high-income status, had at least a college degree, were about 3.5 years out from their survivor's arrest, and were caregivers for a survivor who experienced an out-of-hospital arrest.
Extracardiac symptoms and provision of resources
Responses to questions regarding extracardiac symptoms and provision of resources are presented in Table 2. Many survivors reported experiencing cognitive symptoms (73.1%, n = 122) and psychological symptoms (67.1%, n = 112) at some point after their cardiac arrest. Despite this, only 31.1% of survivors reported having a discussion with their providers about potential cognitive symptoms, and only 26.3% reported having a discussion about potential psychological symptoms. In comparison, 57.7% of caregivers reported having discussions with providers about potential cognitive symptoms and 38.5% reported having discussions about potential psychological symptoms.
Table 2.
Responses to Survey Items Regarding Extracardiac Symptoms and Provision of Resources
| Survey item | Survivors (n = 167) | Caregivers (n = 52) |
|---|---|---|
| Presence of extracardiac symptoms after cardiac arrest, % (n) | ||
| Cognitive symptoms | 73.1 (122) | |
| Psychological symptoms | 67.1 (112) | |
| Discussions with providers about potential symptoms, % (n) | ||
| Cognitive symptoms | 31.1 (52) | 57.7 (30) |
| Psychological symptoms | 26.3 (44) | 38.5 (20) |
| Appointments scheduled by providers before discharge, % (n) | ||
| Neurologist | 8.4 (14) | 23.1 (12) |
| Speech therapist | 1.8 (3) | 13.5 (7) |
| Brain injury specialist | 1.2 (2) | 1.9 (1) |
| Other | 7.8 (13) | 13.5 (7) |
| Psychologist | 4.8 (8) | 5.8 (3) |
| Referrals by providers, % (n) | ||
| Referral to any mental health professionala | 4.2 (7) | 11.5 (6) |
| Referral to support group | 6 (10) | 13.4 (7) |
| Awareness of extracardiac symptoms at discharge, %, (n) | ||
| No awareness | 25.7 (43) | 5.8 (3) |
| A little bit of awareness | 26.3 (44) | 17.3 (9) |
| Somewhat of an awareness | 21.6 (36) | 25 (13) |
| A lot of awareness | 16.2 (27) | 25 (13) |
| Complete awareness | 7.8 (13) | 26.9 (14) |
| Understanding of cardiac arrest at discharge, %, (n) | ||
| No understanding | 11.4 (19) | 1.9 (1) |
| A little bit of an understanding | 31.1 (52) | 25 (13) |
| Somewhat of an understanding | 22.2 (37) | 25 (13) |
| A lot of understanding | 25.7 (43) | 30.8 (16) |
| Complete understanding | 7.8 (13) | 17.3 (9) |
| Current experience of daily memory problems, %, (n) | ||
| Daily memory problems in survivor, %, (n) | 47.9 (80) | 34.6 (18) |
Referral to psychologist, psychiatrist, and/or counselor.
In terms of appointments scheduled by providers before discharge, only 8.4% of survivors and 23.1% of caregivers reported having a neurologist appointment scheduled. Furthermore, only 16.8% of survivors and 34.6% of caregivers reported having at least one of the following cognitive resources scheduled: neurologist, speech therapist, brain injury specialist, or other. Next, only 4.8% of survivors and 5% of caregivers reported having a psychologist appointment scheduled. No more than 6% of survivors and 13.4% of caregivers reported provider referral to any mental health professional or support group.
In terms of awareness of extracardiac symptoms at hospital discharge, about 74% of survivors and 48% of caregivers reported having “somewhat of an awareness” to “no awareness.” Approximately 64.7% of survivors and 52% of caregivers reported having at most “somewhat of an understanding” of cardiac arrest at hospital discharge to “no understanding.”
Comparing provision of resources with cognitive and psychological symptoms
Full details on the comparison between the provision of resources with cognitive and psychological symptoms experienced are presented in Table 3. When compared to the proportion of survivors who reported cognitive symptoms and psychological symptoms, respectively, there were significantly fewer discussions with providers about cognitive and psychological symptoms (p < 0.01), fewer neurologist/cognitive resource and psychologist appointments scheduled (p < 0.001), and fewer referrals to mental health (p < 0.001).
Table 3.
Comparing Provision of Resources with Proportion of Cognitive and Psychological Symptoms Experienced in Current Sample
| Resource provision | Observed value %, (n) | Expected value %, (n) | χ2 Statistic (dfa = 1) | p |
|---|---|---|---|---|
| Survivor report (n = 167) | ||||
| Discussion about potential cognitive symptomsb | 31.1 (52) | 73.1 (122) | 148.4 | <0.001 |
| Discussion about potential psychological symptomsc | 26.3 (44) | 67.1 (112) | 125.6 | <0.001 |
| Neurologist appointment scheduled | 8.4 (14) | 73.1 (122) | 353.7 | <0.001 |
| Neurologist, speech therapist, brain injury specialist, or other appointment scheduled | 16.8 (28) | 73.1 (122) | 269.5 | <0.001 |
| Psychologist appointment scheduled | 4.8 (8) | 67.1 (112) | 293.7 | <0.001 |
| Referral to any mental health professionald | 4.2 (7) | 67.1 (112) | 299.4 | <0.001 |
| Referral to support group | 6 (10) | 67.1 (112) | 282.5 | <0.001 |
| Caregiver report (n = 52) | ||||
| Discussion about potential cognitive symptoms | 57.7 (30) | 73.1 (38) | 6.3 | 0.01e |
| Discussion about potential psychological symptoms | 38.5 (20) | 67.1 (35) | 19.3 | <0.001 |
| Neurologist appointment scheduled | 23.1 (12) | 73.1 (38) | 66.2 | <0.001 |
| Neurologist, speech therapy, brain injury specialist, or other appointment scheduled | 34.6 (18) | 73.1 (38) | 39.2 | <0.001 |
| Psychologist appointment scheduled | 5.8 (3)f | 67.1 (35) | 88.6 | <0.001 |
| Referral to any mental health professional | 11.5 (6) | 67.1 (35) | 72.7 | <0.001 |
| Referral to support group | 13.4 (7) | 67.1 (35) | 67.8 | <0.001 |
df = 1 for all tests.
Expected value set at 73.1% based on proportion of survivors' report of experience of cognitive symptoms.
Expected value set at 67.1% based on proportion of survivors' report of experience of psychological symptoms.
Referral to psychologist, psychiatrist, and/or counselor.
No longer significant after correcting for multiple tests (p > 0.007).
Includes Fischer's exact significance reported for cell with observed value <5.
df, Degrees of freedom.
After correcting for multiple tests, there was no difference in caregiver reports of discussions with providers about cognitive symptoms (p > 0.007).
Sensitivity analysis
A greater proportion of caregivers compared to survivors reported having discussions with providers about cognitive symptoms (p < 0.01), having neurologist appointments scheduled (p < 0.01), and having any cognitive resource appointment scheduled (p < 0.01). There were no other significant differences between caregiver reports and survivors' reports.
Discussion
To our knowledge, this is the first examination of gaps in resource provision for cardiac arrest survivors. Despite three in four survivors reporting the presence of cognitive symptoms and two in three reporting the presence of psychological symptoms after discharge, the provision of resources in these domains was significantly low. Specifically, survivors and caregivers reported significant discrepancies in (1) discussions with providers about potential cognitive and psychological sequelae, (2) neurologist and psychologist appointments scheduled by providers before discharge, and (3) provider referrals to mental health. Taken together, these results suggest that there is an opportunity to improve systematic provision of discharge resources for patients surviving cardiac arrest.
Our results also suggest that cardiac arrest survivors and their caregivers leave the hospital without appropriate recovery expectations. Almost three in four survivors and one in two caregivers reported “somewhat of an awareness” of extracardiac symptoms or worse. Furthermore, two in three survivors and one in two caregivers reported “somewhat of an understanding” of cardiac arrest or worse. These findings are consistent with previous qualitative reports in postarrest samples, such that survivors and caregivers leave the hospital without sufficient understanding of the extracardiac effects of cardiac arrest (Sawyer et al., 2016, 2020).
Based on our sensitivity analysis, a greater proportion of caregivers compared to survivors responded that they (1) had discussions with providers about the potential for cognitive symptoms, (2) had neurologist appointments scheduled, and (3) had any cognitive resource scheduled. Although this does not change our main results, it does highlight the vital role of caregivers for cardiac arrest survivors. Providers may consider including caregivers when coordinating follow-up care, as it may be particularly difficult for survivors to fully grasp discharge instructions, especially if they are experiencing cognitive impairments.
It should be noted that survivors in our sample were independent enough to participate in an online support group (the SCAF) and complete our online survey. Despite this, the vast majority of these survivors still experienced cognitive and psychological symptoms and did not receive the resources to meet their needs. As such, survivors who appear to exhibit good functional status upon discharge may still benefit from receiving cognitive and psychological resources, as with all other survivors.
Our findings contribute to the existing literature in gaps in postdischarge care after cardiac arrest (Sawyer et al., 2016, 2020; Bremer et al., 2019; Whitehead et al., 2020). Consistent with the AHA's recent scientific statement (Sawyer et al., 2020), our findings suggest that there is a strong need for psychological and cognitive resource provision for survivors and caregivers. Accordingly, survivors may benefit from coordinated, comprehensive follow-up care. Discussions should take place with survivors and caregivers (if applicable) about the potential for experiencing extracardiac symptoms. Appropriate referrals and appointment scheduling may also be beneficial in establishing a continuity of care for survivors once they leave the hospital.
Despite the challenges that survivors and caregivers face, there have been a number of centers organizing postarrest discharge and rehabilitation pathways. In Europe, centers in the Netherlands (Moulaert et al., 2015) and the United Kingdom (Mion et al., 2020) have prioritized patient-centered outcomes postarrest. In the United States, dedicated postarrest clinics in Pittsburgh (Elmer et al., 2016) and New York City (Agarwal et al., 2018) also provide multidisciplinary services for survivors.
Limitations
Our survey study is not without limitations. First, our survey is prone to recall bias, as 47.9% of survivors reported still experiencing daily memory problems. In cases where resources may have been provided through discharge packets/instructions, it is possible that certain survivors and/or caregivers did not read their packets and therefore may not have been aware of resources provided to them.
Next, as noted above, our convenience sample comprised high functioning survivors; the discrepancies in resource provision may not necessarily be present in survivors of unfavorable functional status. Indeed, our survey completion rate of 17% suggests that there is a large portion of survivors who we were unable to capture. Nevertheless, the challenges faced by this high functioning sample indicate a need for the provision of resources even for those survivors who quickly regain functional independence. Continued study is needed in survivors who achieve unfavorable functional status and their informal caregivers to better understand the potential cognitive and psychological challenges they face.
Finally, as this was a cross-sectional survey study, we could not assess psychological symptoms and cognitive symptoms at discharge. As such, the presence of psychological symptoms and cognitive symptoms is subjective and should be taken into account when interpreting our results.
Despite these limitations, our survey findings demonstrate a need for care in a high functioning group of survivors who still struggle with extracardiac symptoms years after their arrest.
Conclusion
Our survey results suggest that there are substantial gaps in the provision of cognitive and psychological resources for cardiac arrest survivors with good neurologic recovery. Health care providers may not realize survivors and families need appropriate expectations for recovery, including the potential to develop cognitive and psychological symptoms. Systematic referral processes may be needed to standardize resource provision to consistently meet the pervasive cognitive and psychological needs of cardiac arrest survivors. Providers should include caregivers (if applicable) in these planning discussions, given that survivors may suffer from various degrees of cognitive impairment.
Supplementary Material
Acknowledgments
We would like to thank the members of the SCAF for their participation in our research. We would also like to thank SCAF leadership for making this research possible.
Author Disclosure Statement
The authors report no competing financial interests.
Funding Information
Both A.P. and this study were supported by the National Center for Advancing Translational Sciences of the National Institutes of Health (NIH) under award number TL1 TR002533. S.A. received support from the National Heart, Lung, and Blood Institute of the NIH under award number R56HL153311. Contents are the authors, sole responsibility and do not necessarily represent official NIH views.
Supplementary Material
References
- Agarwal S, Presciutti A, Anbarasan A, et al. NeuroCardiac Comprehensive Care Clinic seeks to define and detect neurological, psychiatric, and functional sequelae in cardiac arrest survivors. Circulation 2018;138:A302. [Google Scholar]
- Agarwal S, Presciutti A, Cornelius T, et al. Cardiac arrest and subsequent hospitalization-induced posttraumatic stress is associated with 1-year risk of major adverse cardiovascular events and all-cause mortality. Crit Care Med 2019;47:e502–e505. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Bremer A, Dahné T, Stureson L, et al. Lived experiences of surviving in-hospital cardiac arrest. Scand J Caring Sci 2019;33:156–164. [DOI] [PubMed] [Google Scholar]
- Charlson ME, Pompei P, Ales KL, et al. A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis 1987;40:373–383. [DOI] [PubMed] [Google Scholar]
- Elmer J, Rittenberger JC, Coppler PJ, et al. Long-term survival benefit from treatment at a specialty center after cardiac arrest. Resuscitation 2016;108:48–53. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Gamper G, Willeit M, Sterz F, et al. Life after death: posttraumatic stress disorder in survivors of cardiac arrest—prevalence, associated factors, and the influence of sedation and analgesia. Crit Care Med 2004;32:378–383. [DOI] [PubMed] [Google Scholar]
- Lippa SM, Hawes S, Jokic E, et al. Sensitivity of the RBANS to acute traumatic brain injury and length of post-traumatic amnesia. Brain Injury 2013;27:689–695. [DOI] [PubMed] [Google Scholar]
- Mion M, Al-Janabi F, Islam S, et al. Care after REsuscitation: implementation of the United Kingdom's first dedicated multidisciplinary follow-up program for survivors of out-of-hospital cardiac arrest. Ther Hypothermia Temp Manag 2020;10:53–59. [DOI] [PubMed] [Google Scholar]
- Moulaert VR, van Heugten CM, Winkens B, et al. Early neurologically-focused follow-up after cardiac arrest improves quality of life at one year: a randomised controlled trial. Int J Cardiol 2015;193:8–16. [DOI] [PubMed] [Google Scholar]
- Moulaert VR, Verbunt JA, van Heugten CM, et al. Cognitive impairments in survivors of out-of-hospital CA: a systematic review. Resuscitation 2009;80:297–305. [DOI] [PubMed] [Google Scholar]
- Moulaert VR, Wachelder EM, Verbunt JA, et al. Determinants of quality of life in survivors of cardiac arrest. J Rehabil Med 2010;42:553–558. [DOI] [PubMed] [Google Scholar]
- National Alliance for Caregiving. Caregiving in the U.S. 2009. AARP Research, December 2009. https://www.aarp.org/research/topics/care/info-2014/caregiving_09.html (accessed February 15, 2021).
- Presciutti A, Newman MM, Grigsby J, et al. Associations between posttraumatic stress symptoms and quality of life in cardiac arrest survivors and informal caregivers: a pilot survey study. Resuscitation Plus 2021;5:100085. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Presciutti A, Newman MM, Vranceanu AM, et al. Associations between depression and anxiety symptoms with quality of life in cardiac arrest survivors with good neurologic recovery and informal caregivers of cardiac arrest survivors. J Affect Disord Rep 2020a;2:100046. [Google Scholar]
- Presciutti A, Shaffer J, Sumner JA, et al. Hyperarousal symptoms in cardiac arrest survivors are associated with 13 month risk of major adverse cardiovascular events and all-cause mortality. Ann Behav Med 2020b;54:413–422. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Presciutti A, Sobczak E, Sumner JA, et al. The impact of psychological distress on long-term recovery perceptions in cardiac arrest survivors. J Crit Care 2019;50:227–233. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Presciutti A, Verma J, Pavol M, et al. Posttraumatic stress and depressive symptoms characterize cardiac arrest survivors' perceived recovery at hospital discharge. Gen Hosp Psychiatry 2018;53:108–113. [DOI] [PubMed] [Google Scholar]
- Randolph C, Tierney MC, Mohr E, et al. The Repeatable Battery for the Assessment of Neuropsychological Status (RBANS): preliminary clinical validity. J Clin Exp Neuropsychol 1998;20:310–319. [DOI] [PubMed] [Google Scholar]
- Sawyer KN, Brown F, Christensen R, et al. Surviving sudden cardiac arrest: a pilot qualitative survey study of survivors. Ther Hypothermia Temp Manag 2016;6:76–84. [DOI] [PubMed] [Google Scholar]
- Sawyer KN, Camp-Rogers TR, Kotini-Shah P, et al. Sudden cardiac arrest survivorship: a Scientific Statement from the American Heart Association. Circulation 2020;141:e654–e685. [DOI] [PubMed] [Google Scholar]
- Whitehead L, Tierney S, Biggerstaff D, et al. Trapped in a disrupted normality: survivors' and partners' experiences of life after a sudden cardiac arrest. Resuscitation 2020;147:81–87. [DOI] [PubMed] [Google Scholar]
- Wilder Schaaf KP, Artman LK, Peberdy MA, et al. Anxiety, depression, and PTSD following cardiac arrest: a systematic review of the literature. Resuscitation 2013;84:873–877. [DOI] [PubMed] [Google Scholar]
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