Postcardiac Arrest Care Clinics and Multidisciplinary Outpatient Follow Up

Cardiac arrest survivorship is an evolving field focusing on long-term recovery, encompassing physical, cognitive, and psychological health. Despite increased survival rates, many survivors face challenges such as cognitive impairment, emotional distress, mobility issues, and caregiver burden. Current follow-up care has limited structured screening and multidisciplinary support. A pilot recovery program at a single center demonstrated high rates of cognitive impairment and readmissions, highlighting the need for comprehensive post-intensive care unit clinics, nurse navigation, and targeted interventions. Key research priorities include long-term outcome studies, rehabilitation strategies, telemedicine, caregiver support, and cost-effectiveness analyses to optimize survivor care and improve quality of life.

Key points

•
Cardiac arrest survivorship is wrought with psychological, physical, and cognitive disability, much of which goes underrecognized by health care professionals.
•
Discharge planning is not standardized, thus limiting access to critical evaluations and services that have the potential to impact intermediate and long-term outcomes.
•
Nurse navigators may bridge gaps across the care continuum, thereby improving transitions of care.
•
Postcardiac arrest care clinics need to identify unique resources in their institution to develop sustainable care models.

Abbreviation

ALASCA	activity and life after survival of cardiac arrest
BCAT	brief cognitive assessment tool
CPC	cerebral performance category
DANCAS	DANish cardiac arrest survivorship
HADS-A	hospital anxiety and depression scale
HUI3	health utility index version 3
ICU	intensive care unit
MoCA	Montreal cognitive assessment
PASS	postacute symptomatic seizure
PICS	post-ICU care syndrome
PTS	post-traumatic stress
PTSD	post-traumatic stress disorder
SF-36	short form 36-item
STAR	sepsis transition and recovery program
TTM	targeted temperature management

Introduction

Cardiac arrest is a leading cause of morbidity and mortality worldwide. Due to rising incidence, improved resuscitation, and postresuscitation management, the number of cardiac arrest patients surviving to hospital discharge is increasing over time. Functional recovery continues beyond hospital discharge. Amongst patients discharged alive, 1-year survival rates are higher for cardiac arrest patients compared to matched noncardiac arrest intensive care unit (ICU) patients. Survivors of cardiac arrest represent a diverse group of patients, often with complex psychosocial, medical, physical, cognitive, and emotional needs. Cardiac arrest survivorship is a growing framework focused on individualized recovery following critical illness including the needs of the patient-caregiver dyad. In a survey study evaluating provision of resources following cardiac arrest, at least 2 in 3 patients experienced cognitive or psychological symptoms but less than 1 in 3 discussed these symptoms with their providers, and less than 1 in 10 were scheduled to have follow-up with a psychologist or neurologist following hospital discharge. In 2020, a 6th link of the American Heart Association chain of survival, focusing on recovery, was added. These recommendations included (1) a structured assessment for anxiety, depression, post-traumatic stress, and fatigue, (2) multimodal rehabilitation assessment before hospital discharge, and (3) comprehensive, multidisciplinary discharge planning to anticipate patient needs. Unfortunately, many challenges impede implementing these recommended discharge planning goals. The American Heart Association recently published urgent research goals focusing on cardiac arrest survivorship, including the long-term trajectory of cognitive and psychosocial disorders as well as the role and impact of rehabilitation, cognitive, and/or psychological interventions on recovery. Knowledge gaps on whether hospital-based protocolized discharge planning improves access to services or patient outcomes exist. In the last decade, the clear need for post-ICU follow-up clinics has emerged; however, guidelines on an accepted model for the delivery of post-ICU care are lacking as are the cost-effective data needed to justify their development. In a multicenter survey to intensivists in France, 1 in 4 ICUs offered follow-up visits, typically a single visit led by an intensivist 3 to 6 months following ICU discharge and less than 5% of admitted ICU patients were seen in post-ICU clinic. While some reviews discuss ideas for expanding a clinical model for postcardiac arrest recovery, no one has published their experience in building a cardiac arrest recovery program. We will review the literature surrounding cardiac arrest survivorship, discuss challenges related to transitions of care in this unique population, address knowledge gaps and research priorities, and share our experience developing a postcardiac arrest recovery program.

Cardiac arrest survivorship, what do we know?

Improvements in ICU care over the last 2 decades have led to increased survival following critical illness. Survivorship refers to the plight of the patient and family following discharge from the ICU with a focus on improving recovery, well-being, and functional independence. Cardiac arrest survivorship is wrought with psychological, physical, and cognitive disability, much of which goes underrecognized by health care professionals. The American Heart Association scientific statement on sudden cardiac arrest survivorship raised public awareness; however, knowledge of the survivor and family experience is still lacking and limited by inadequate and nonstandardized follow-up care and heterogeneity in survivor experience.

Quality of Life

While the majority of published literature supports an acceptable quality of life amongst cardiac arrest survivors, there is significant heterogeneity in methods for assessing quality of life. The cerebral performance category (CPC) score is the most common outcome measure obtained in follow-up, but may not accurately predict quality of life. A systematic review including 25 articles providing evidence for 10 different structured assessments of an individual’s health-related quality of life, found that validity was strongest for the Health Utility Index Version 3 (HUI3) and Short Form 36-item Health Survey (SF-36). The HUI3 is a rating scale focused on general health-related quality of life with respect to vision, hearing, speech, ambulation, dexterity, emotion, cognition, and pain. The SF-36 is a self-reported measure of health quality of life covering limitations in physical or social activities; limitations in usual activities due to physical health, bodily pain, and mental health; limitations secondary to mental health, energy level, and general health perceptions. In a predefined analysis of 1-year outcomes within the Treatment of Electrographic Status Epilepticus after Cardiopulmonary Resuscitation trial, quality of life was lower than previously reported and did not consistently correlate with CPC scores. Although limited, this data suggests that hospital level factors such as the presence of rhythmic and periodic patterns on electroencephalography during index admission influence long-term recovery trajectories. In a prospective observational study of survivors at 4 years following cardiac arrest, 95% of survivors had a good outcome, defined as a CPC 1 to 2. Among the 8 SF-36 dimensions, cardiac arrest survivors only scored lower than the reference population for general health [mean (95% CI) 67.2 (62.1, 72.3) versus 72.9 (71.9, 74.0), P =.03]. Survivors aged less than 58 years were more likely to report worse general health, vitality, social functioning, mental health, and higher anxiety levels than older cardiac arrest survivors. This data suggests that long-term gains are possible with most survivors achieving a quality of life similar to matched controls. The Activity and Life after Survival of Cardiac Arrest (ALASCA) trial was a multicenter randomized controlled trial evaluating the impact of stand still… and move on , on several outcome measures including quality of life. This intervention included screening for and education on cognitive and emotional problems, support of neurologic symptoms and specialist referral, promotion of self-management strategies, and screening for caregiver strain. The intervention occurred within 1 month of hospital discharge with specialized nurses in 1 to 6 face-to-face consultations. At 1 year, the intervention group had improved quality of life, measured by SF-36, in the emotional, mental health, and general health domains. Importantly, return to work at 3 months following cardiac arrest was significantly higher in the intervention group (50% vs 21%, P =.006). The authors hypothesized that the educational intervention was successful due to improved patient awareness of brain injury, an often underrecognized or invisible problem. A subsequent study, found that the stand still…and move on intervention resulted in early detection of cognitive and emotional dysfunction and increased referrals, which was cost-effective due to relatively low costs of the intervention and positive societal economic impact. Further work is needed to identify interventions capable of improving quality of life in survivors of cardiac arrest, as well as in caregivers.

Cognitive Function

The multicenter Recovery after Cardiac Arrest Survival cohort study prospectively evaluated for cognitive impairment using the Montreal Cognitive Assessment (MoCA) during hospitalization and neuropsychological test battery at 3 months. The median (interquartile range) MoCA score was 24 (21-26) and 65% met criteria for cognitive dysfunction. Patients with a MoCA score less than 26 during hospital admission had higher odds of unfavorable cognitive outcome, defined as 1.5 standard deviations below norm on 1 test or 1 standard deviation less than norm on ≥ 2 tests, at 3 month follow-up. Over half (53%, n = 107) of the study population had a cognitively unfavorable outcome at 3 months. A multicenter prospective longitudinal cohort study within a nested randomized controlled trial, ALASCA, tracked cognition amongst cardiac arrest survivors predominantly discharged to home (89%, n = 114). Cognitive function was assessed using a neuropsychologic test battery covering several domains of cognition, in addition to a subjective assessment of cognitive dysfunction using the Cognitive Failures Questionnaire. At 2 weeks following cardiac arrest, cognitive dysfunction was present in 26% (n = 34), which improved to 15% (n = 18) at 3 months, and 13% (n = 14) at 1 year. Executive functioning followed by semantic memory and word fluency were the most common abnormalities. Subjective cognitive complaints increased overtime and did not correlate with neuropsychological testing. While the largest improvements in cognition were detected in the first 3 months, improvement was still seen between 3 months and 1 year. Interestingly, subjective cognitive complaints at 3 months were more predictive of quality of life than objective cognitive impairment, suggesting that screening for emotional and cognitive complaints is important, independent of formal cognitive evaluation.

Psychological Symptoms

In a prospective study using the national Swedish Cardiopulmonary Resuscitation Registry, mild to moderate anxiety, defined by a Hospital Anxiety and Depression Scale (HADS-A) score of greater than 7, was reported by 30% of survivors at 3 months and 23% of survivors at 1 year post cardiac arrest. Likewise, mild to moderate depression, defined by HADS-D greater than 7, was reported by 14% (n = 4) at 3 months and 5% (n = 10) at 1 year. Female sex was a strong predictor of psychological distress. Within the Targeted Temperature Management trial, the incidence psychological distress at 6 month follow-up was similar to ST elevation myocardial infarction control patients. Subjective cognitive dysfunction was associated with an increased risk for psychological distress. In a single academic center prospective study, positive psychology factors were assessed and correlated with emotional distress at hospital discharge. One in three cardiac arrest survivors experienced emotional distress, defined by the post-traumatic stress disorder checklist and PROMIS emotional distress measures. Positive psychology factors (mindfulness, existential well-being, resilient coping, and perceived social support) were all independently associated with lower levels of emotional distress. As these are teachable skills, behavioral health interventions may improve emotional distress in cardiac arrest survivors.

Mobility Impairment

Within the first week of an ICU admission, patients can suffer significant loss in muscle mass. Consequently, new physical impairment is common amongst ICU patients, as high as 41% (n=266) 1-year following medical ICU discharge. In a post hoc analysis of the targeted hypothermia versus targeted normothermia after out-of-hospital cardiac arrest (TTM2) trial, one-third of cardiac arrest survivors reported a low physical activity level at 6 months following cardiac arrest. Low physical activity was associated with obesity, mobility problems, and cognitive impairment. While poor mobility may be secondary to post-ICU syndrome, movement disorders can also limit mobility in patients with hypoxic ischemic brain injury. In a retrospective study at a single academic medical center, 26.4% (n = 19) of patients diagnosed with hypoxic ischemic brain injury developed a posthypoxic movement disorder or Lance Adams syndrome. The occurrence of posthypoxic movement disorder is associated with structural basal ganglia dysfunction.

Caregiver Burden

Few publications focus on the well-being of caregivers of cardiac arrest survivors; however, data suggest that post-traumatic stress disorder (PTSD) may be higher in caregivers than survivors of cardiac arrest. The Sudden Cardiac Arrest Foundation surveyed cardiac arrest survivors and caregivers, who reported on post-traumatic stress, using the PTSD checklist-5; survivors had a positive post-traumatic stress (PTS) screen in 25% (n = 42), while caregivers had a positive PTS screen in 34.6% (n = 18). Amongst caregivers, PTS was associated with worse physical and psychological quality of life. In a substudy of the Targeted Temperature Management (TTM) trial, caregiver burden at 6 months was similar between survivors of cardiac arrest and myocardial infarction; however, caregivers of cardiac arrest survivors with cognitive impairment had higher caregiver burden. In a national cross-sectional survey (DANish Cardiac Arrest Survivorship [DANCAS]) of out-of-hospital cardiac arrest survivors and their closest relatives, caregiver strain occurred in 24% (n = 137) and poor mental health well-being, anxiety, and depression were identified as risk factors for caregiver strain. In a prospective, cohort study focused on caregivers of cardiac arrest survivors, part of the multicenter ALASCA trial, caregivers were assessed at 1year following cardiac arrest using several validated quality of life and caregiver strain assessment tools. At 1 year, 15% (n = 16) of caregivers were classified as high perceived burden of caregiver strain, 25% (n = 33) reported anxiety (HADS-A), 14% (n = 18) reported depression (HADS-D), and 42% (n = 59) met criteria for a powerful impact event, determined by an impact of event scale greater than 25. The impact of event scale measures psychological reactions, such as intrusion and avoidance that can take place after a traumatic event. Similar to findings in cardiac arrest patients, quality of life improved the most during the first 3 months, but social and emotional functioning continued to improve at 1 year following cardiac arrest. Importantly, mental health symptoms at 1 year were associated with increased risk for caregiver strain. Social-cognitive-based intervention programs focused on the patient-caregiver dyad have shown improved caregiver burden compared to patient-only interventions.

Approaches to cognitive and mental health screening and discharge planning

Despite guideline recommendations, which support structured assessments for cognitive and mental health screening and multidisciplinary discharge planning, there is a paucity of data regarding early approaches to cognitive and mental health screening of cardiac arrest survivors. The ALASCA trial evaluated an intervention called stand up…, and move on , which connected each patient with a trained cardiac arrest nurse to show the feasibility of early screening. Initial consultation was intended to begin within 1 month of discharge, but was often delayed, on average occurred at 90 days following cardiac arrest. This intervention was subsequently shown to improve quality of life and reduce time until return to work compared to usual care. Given the minimal costs of the intervention and improvement in societal economic effects, it was found to be cost-effective. Survivorship is a growing field within ICU medicine and recovery clinics focused on post-ICU care syndrome (PICS) are still in their infancy. In a multicenter survey study to 252 ICUs, of which 161 responded, only 1 in 4 offered follow-up visits, typically a single visit led by an intensivist 3 to 6 months following ICU discharge. Despite the high prevalence of cognitive and psychological symptoms in this population, fewer than 1 in 4 discuss these symptoms with their providers and only 1 in 10 are referred to a neurologist or behavioral health provider at the time of hospital discharge. Once diagnosed, interventions employed by memory and behavioral health specialists can be applied to improve cognitive and mental health recovery. ^,^,^, However, their limited availability makes accurate patient selection important for efficient resource allocation and adequate support to those in need and likely to benefit. ^, Since recovery among cardiac arrest survivors is heterogenous and only 40% have awareness of extracardiac symptoms at the time of hospital discharge, guideline-recommended structured assessments at hospital discharge may be insufficient in informing optimal follow-up. ^, There are proposed trials to evaluate the feasibility and efficacy of routine mental health and cognitive screening in PICS follow-up clinic. ^, There is less published specific to postcardiac arrest recovery clinics; however, key elements and necessary personnel have been outlined. ^,

Nurse navigators are health care professionals who play an important role in patient advocacy and support by facilitating treatments, transitions of care, and education, while addressing any barriers to quality care. Oncology is one of the first specialties to employ nurse navigators as a standard of professional practice. This role has been adapted in other subspecialties and has been shown to be effective at reducing hospital readmissions and mortality. In a single center prospective prequality and postquality improvement project, the development of a standardized transitional stroke clinic led by nurse practitioners was feasible and led to a reduction in 30-day readmission. These findings have been replicated in stroke survivors ^,^, and a systematic review and network meta-analysis found that transitional care services for patients discharged following heart failure resulted in a reduction in all-cause mortality. A randomized clinical trial of a nurse navigator-led, multicomponent Sepsis Transition And Recovery program showed that patients in the intervention arm had a reduction in mortality and 30-day readmission compared to usual care. An implementation trial called Engagement and Collaborative Management to Proactively Advance Sepsis Survivorship is now underway. While qualitative studies of cardiac arrest survivors and family members suggest that support through transitions of care is urgently needed, ^, there are no studies evaluating the role of nurse navigators in cardiac arrest survivors.

Post-intensive care unit clinics

While post-ICU care clinic goals need to be individualized to the patient, there are several broad categories to address, including (1) debriefing of the ICU stay, (2) reconciliation of new medications and assessing long-term need, (3) evaluation of PICS, (4) management of organ dysfunction or assessment for resolution, (5) following up on testing and results, (6) addressing need for subspecialty referrals, (7) patient and caregiver support, education, and anticipatory guidance, and (8) discussion of overall goals of care. The design of the post-ICU care clinic, including which disciplines are required and when or how patients are followed, will depend on the primary purpose of the clinic. While some clinics focus solely on transitions of care, others focus on improving short and long-term outcomes or providing consistent care to facilitate ongoing discussions regarding recovery trajectory and goals of care. In the absence of comparative effectiveness of different post-ICU models, there are no data to support one approach. Primary care doctors or general neurologists may be ill-equipped to manage and coordinate the complex needs of post-ICU survivors and in the case of cardiac arrest, may not have the expertise to address symptoms related to PICS and hypoxic ischemic brain injury. Neurocritical care is a predominantly inpatient specialty with no outpatient footprint. As such, the development of neuro-recovery clinics has additional challenges to post-ICU care clinics, since medical intensivists often have outpatient subspecialty clinics on their off-service weeks. While these challenges can be navigated, neuro-recovery clinic models are underrepresented in the literature. ^,^,

Design of a novel cardiac arrest recovery program and pilot data regarding utilization

We describe the development of a cardiac arrest recovery pilot program at a single academic medical center and explore challenges, opportunities, and the relationships needed to support program growth. While there are many potential goals of a postcardiac arrest recovery program, our priority was to improve screening for PICS, optimize discharge disposition, and improve access to subspecialty follow-up.

Building a Team

At our institution any patient resuscitated following cardiac arrest has a chill alert called, which rapidly brings neurology consultants to the bedside. All cardiac arrest cases are staffed by the neurocritical care team who provide recommendations regarding initial management, such as temperature control and brain-centered resuscitation goals, and longitudinally follow patients to minimize secondary brain injury, interpret neuroprognostic assessments and participate in multidisciplinary goals of care (or advanced planning) conversations. We have an Accreditation Council for Graduate Medical Education (ACGME) accredited neurology residency program, and our residents are the primary consultant for all cardiac arrest patients. Given the high mortality rate amongst cardiac arrest survivors and the limited exposure to critical care (∼8 weeks over the 4 years of residency), we thought it was important to ensure they had outpatient follow-up with cardiac arrest survivors. Two neurointensivists (RB, EJG) were available to the neurology residents to assist with evaluation and management. Using the neurology resident clinic framework, we were able to meet with the clinic social worker to address specific resources and patient needs. We recognized that a formalized process, involving our nurse navigator resources, was important to ensuring appropriate patient scheduling in neurology resident clinic. Our institution has a large stroke nurse navigator program, experienced in longitudinally tracking recovery and rehab assessments and coordinating transitions of care into the community. We identified a neurotrauma nurse navigator (JG) who expressed interest in our cardiac arrest pilot and was pivotal in developing the cardiac arrest recovery program. Given the limited resources, it was important to have processes in place for cognitive screening before hospital discharge to ensure that neurology clinic was available to those who would most benefit. We met with leaders in speech pathology who agreed to evaluate cardiac arrest patients before hospital discharge using the MoCA or Brief Cognitive Assessment Tool (BCAT). As the goal of our program was to ensure subspecialty follow-up, we also developed collaborations with neuropsychology, health psychology, the department of medicine, section of pulmonary post-ICU recovery clinic, and the postacute symptomatic seizure (PASS) clinic. Fig. 1 shows a diagram of our workflow. Our nurse navigator screened all cardiac arrest patients and tracked their recovery. Patients who regained consciousness and had the ability to follow basic commands were enrolled. Speech and language pathologists performed a cognitive evaluation using a standardized assessment (MoCA or BCAT) before hospital discharge, which informed the need for follow-up with a neuropsychologist. Physical and occupational therapy recommendations were reviewed in real time (RB, EJG); physical medicine and rehabilitation were additionally consulted in cases where the neurointensivist felt the patient could tolerate more intensive rehab. Medications were reviewed for all patients and those being discharged on a new antiseizure medication were set up with follow-up in PASS clinic.