Comprehensive Care of ICU Survivors: Development and Implementation of an ICU Recovery Center

Abstract

Purpose

To describe the design and initial implementation of an Intensive Care Unit Recovery Center (ICU-RC) in the United States.

Materials and Methods

A prospective, observational feasibility study was undertaken at an academic hospital between July 2012 and December 2015. Clinical criteria were used to develop the ICU-RC, identify patients at high risk for post intensive care syndrome (PICS), and offer them post-ICU care.

Results

218/307 referred patients (71%) survived to hospital discharge; 62 (28% of survivors) were seen in clinic. Median time from discharge to ICU-RC visit was 29 days. At initial evaluation, 64% of patients had clinically meaningful cognitive impairment. Anxiety and depression were present in 37% and 27% of patients, respectively. One in three patients was unable to ambulate independently; median 6 minute walk distance was 56% predicted. Of 47 previously working patients, 7 (15%) had returned to work. Case management and referral services were provided 142 times. The median number of interventions per patient was 4.

Conclusions

An ICU-RC identified a high prevalence of cognitive impairment, anxiety, depression, physical debility, lifestyle changes, and medication-related problems warranting intervention. Whether an ICU-RC can improve ICU recovery in the US should be investigated in a systematic way.

Introduction

Over 6 million patients become critically ill each year. Of these, an increasing number will survive due to advances in critical care [1]. However, this survival is not without cost. As the long term effects of critical illness become known, the need to design and implement effective interventions to rescue critical illness survivors from incomplete recovery has become a pressing priority for many clinicians. However, evidence based guidelines for intensive care unit (ICU) follow up and recovery remain elusive. In 2012, we started seeing patients in an outpatient team clinic designed to screen for and treat Post Intensive Care Syndrome (PICS), with the goal of promoting recovery for the sickest patients who survive the ICU. This effort was inspired by a patient in the Vanderbilt Medical ICU, and was undertaken as a pragmatic clinical intervention in an attempt to address the multifaceted yet ICU-specific problems emerging in the literature and in practice.

At the time, there was little to guide us in the development of an ICU follow up program. ICU survivors have high rates of mortality and increased health care utilization following discharge [2–13]. The rise in survivorship has created a burgeoning population suffering from long-term consequences of critical care [13–18], including cognitive impairment [18–23], anxiety [16–18], depression [13, 15–18], post-traumatic stress disorder [13–18, 24], decreased quality of life [9, 12, 25–29], and physical disability [17, 20, 30, 31]. This constellation of problems is now known as PICS, a condition of new or worsening dysfunction in key domains such as cognition and physical function that persists beyond the inciting critical illness [32]. Despite the success of survivorship programs in the treatment of other populations [33] and a call for action to improve the lives of ICU survivors [34, 35], there are few programs aimed at decreasing morbidity and mortality in the post ICU recovery period in the United States (US).

Early attempts in the United Kingdom (UK) and Scandinavia were conducted in very different health care environments, with different providers (primarily advanced practice nurses), and distant from the index hospitalization [36–39]. The most commonly studied outcome was health related quality of life (typically defined by outcome measures that may or may not correlate with patient’s “real world” concerns), and in this domain an ICU follow up program did not appear to have significant effect. In recent years, interest in real world approaches to caring for ICU survivors has continued to grow, but the interventions and outcomes needed in this population remain unproven [40–43]. In our tertiary US medical center, complex medical patients are often uninsured, or otherwise lacking in the support structures necessary for a successful recovery, including a preexisting relationship with a primary care physician. The concept of a post intensive care syndrome was not (and still is not) widely known nor understood by patient, families, and medical providers. And, the specialists or interventions that might prove effective in remediating the deficits experienced by patients after the ICU were not understood.

In an attempt to increase our understanding and outline the most pressing needs in the post-ICU period, we spoke with current and former patients, study participants, family members, and health care providers. We assembled some of the same team members who work closely together to care for patients in the ICU, and translated their expertise to the outpatient setting. Then, we identified patients thought to be at highest risk for post-ICU complications by the clinical criteria that were known in the literature at the time: septic shock; lung injury, especially when treated with mechanical ventilation, and delirium [2, 8, 14, 15, 20, 23].

Clinic Description

The ICU Recovery Center (ICU-RC) at Vanderbilt opened in 2012. The genesis of this clinic was grounded in clinical and research insights dating back at least a decade and borrowed elements from other successful team clinic models, notably those addressing cancer survivorship; there are over 300 of these highly specialized clinics in North America, where they are now considered standard care. Patients with severe critical illness, as indicated by mechanical ventilation, sepsis or septic shock, and/or delirium, were offered an ICU follow up appointment after discharge to home. As the ideal model for care of the post-ICU patient is unknown, the criteria for patient recruitment, the design of the clinic intervention, and the services offered to patients were iterative and continuously refined as patients were seen. A survey of early patients attending the clinic was administered at the end of the initial visit, in an attempt to refine the model down to those elements patients and family members found most useful (see Supplement 1a for a summary of responses). In addition, we conducted several community engagement studios and focus groups with ICU survivors and their families, in order to identify features and elements of ICU follow up that patients and families had found lacking in the recovery from critical illness. Studios and focus groups were facilitated and recorded by an experienced community engagement team, and major themes regarding post-ICU recovery needs and barriers were grouped by impact area [44]. See Supplement 1b for the major themes that emerged from this process, as well as some of the iterative changes that were made in response to patient and family feedback.

The clinical team was modeled on the interdisciplinary team caring for patients in the ICU: intensivist, including our innovative independent nurse practitioner team [45, 46], critical care pharmacist, case manager, and neuropsychologist. This allowed us to identify patients at high risk for post-ICU complications during their ICU stay. Identified patients were then followed in the electronic medical record until hospital discharge, or death. Initially, patients were called after discharge to home to arrange ICU follow up, but this approach revealed a number of barriers to ICU follow up:

1. Many patients were so debilitated following discharge that they were unable to return to their personal residences, and thus, home based contact information was unreliable. Some of these patients stayed with friends or families; others were simply lost to follow up. In response, efforts were made to verify contact information and obtain at least two backup numbers prior to hospital discharge.

2. The time lag and number of care transitions between ICU and home were large. In some cases patients were not discharged to home and therefore not ready to be seen in clinic for weeks to months following candidate identification in the ICU. Attempts to automate patient tracking have not yet been successful in our system. In addition, once patients left our system, e.g., transferred to inpatient rehabilitation, long term acute care, or skilled nursing, they were much more difficult to track, and some were lost to follow up this way.

3. Without an introduction to the concept of PICS, and possessing high rates of cognitive impairment affecting abilities such as awareness and comprehension, many patients and their families did not understand the urgent need for or potential benefit of ICU specific follow up, thus a number of patients declined to schedule an appointment, and no show rates for scheduled appointments were high. In response, we implemented a visit from a team member prior to hospital discharge. During this visit, the concept of PICS was introduced, written information provided, and a contact number for problems prior to the clinic visit listed. This represented an improvement and, yet, many patients still failed to fully appreciate the magnitude of problems they were about to face upon returning home and attempting to reengage in the normal activities that often reveal the presence and intensity of new limitations.

4. The population we are trying to reach is weak, sick, and cognitively impaired. Family members and other support people are encouraged to accompany the patient to their initial clinic visit. In reality, most patients are unable to attend without this support: they are usually too weak to drive or are afraid to drive, have trouble remembering appointments or engaging in planning tasks that would ensure they arrived at their appointments, and are often readmitted before they are able to attend clinic.

5. Mortality rates for critical illness remain high. Around one fifth of the patients we identify as candidate for ICU follow up do not survive to hospital discharge, and a number of those who did survive to discharge died in the year following their ICU stay. In order to identify and treat early post-hospital issues that may contribute to readmission, and based on earlier literature that suggested that previous attempts at ICU follow up occurred too distant from the index hospitalization, the initial ICU-RC visit was targeted for approximately two weeks after discharge to home. Based on existing and emerging literature describing post-ICU deficits in physical function, including airway issues and weakness, medication management, cognitive function, mood, and socioeconomic parameters including health care utilization, driving, and return to work [4, 6, 19, 25, 28, 30, 47–49], the clinic visit was planned in six interdisciplinary stages:

   1. Screening spirometry and six minute walk test

   2. Medication reconciliation and counseling

   3. Review of ICU course and related active medical problems

   4. Screening for depression, anxiety, and post-traumatic stress disorder (PTSD)

   5. Brief cognitive assessment and targeted psychotherapy

   6. Targeted case management assessment

These parameters mirror the outcomes now defined by Needham et al. as imperative to understanding the long term effects of critical illness [50].

Given the increased mortality risk in this population, palliative care was a feature of the initial clinic design. However, the patients and families who returned for the clinic intervention were almost uniformly focused on recovery to baseline, leading us to move away from a formal palliative care element, and to change the name of the clinic from the ICU Survivor Clinic to the ICU Recovery Clinic at Vanderbilt. Elements that were added or emphasized based on the needs of early patients included starting the “intervention” during the acute hospitalization, with visits and education about PICS at ICU and hospital discharge. The characteristics and early outcomes of our initial cohort are described in this report.

MATERIALS AND METHODS

Study Design and Participants

We conducted a prospective, observational feasibility study of adults referred to a pragmatic clinical pilot program, the ICU-RC, at a tertiary care center (VUMC) between July 2012 and December 2015. Eligible patients were critically ill adults ≥ 18 years old with one or more risk factors for the development of PICS, including sepsis, delirium, or respiratory failure requiring mechanical ventilation. Patients were excluded for terminal illness with life expectancy < 6 months, hospice referral or comfort measures only, pre-existing cognitive impairment (with exclusion of mild cognitive impairment, i.e., memory deficits only), residence at a long-term skilled nursing facility, disease-specific follow-up already in place, or if they were established with another intensivist (e.g., pulmonary physician). Appropriate patients were asked to return to the ICU-RC. The Institutional Review Board at VUMC approved this analysis with waiver of informed consent (IRB#151961).

Timeline and Evolution

The ICU-RC was developed from 2011–2012 in response to reports of patients and families struggling to manage the consequences of critical illness. Patients included in this report were enrolled during the initial three year pilot period; the ICU-RC has grown and remains active but analysis was confined to the initial development and implementation period. Some early components of the clinic were eliminated in response to patient feedback as the model was refined. Some elements were added as we became familiar with the characteristics of our clinic population. In particular, we noticed that the immediate post-discharge period was often a unique opportunity to capitalize on the “teachable moment” that follows critical illness: for example, many patients had involuntarily experienced smoking cessation and weight loss, and were receptive to preventative care, such as immunizations, that could impact recovery. The clinic has no specific clinical nor research funding; team members combine their time in clinic with other clinical duties, e.g., in the ICU. Clinic visits are billed to insurance as indicated for ICU follow up care and neuropsychological evaluation and treatment, as appropriate. VUMC provides clinic space and infrastructure. Data were collected for quality improvement and to develop new research questions.

Prior to January 2014, referrals that did not result in an appointment were not consistently tracked. A formalized referral-tracking system was adopted in response to the volume of referrals seen after the first year and was implemented by additional personnel joining the team. After the clinic’s evolution into a standardized system, the components of care were maintained consistently and there were no major variations in the approach to care of the ICU survivors.

Recruitment

Referred patients were followed by an ICU-RC coordinator (this role was performed at various time points by a nurse practitioner, case manager, or clinical pharmacist) throughout their hospital stay and then offered an appointment. Referrals were recorded in a secure online database (REDCap electronic data capture tools hosted at VUMC) containing relevant demographic information (project-redcap.org). The hospitalization at the time of referral was considered the index hospitalization. Patient records were reviewed for vital status 6 months after discharge or later. The death date or last date the patient had been known to be alive was recorded. If discharged from the index hospitalization with hospice services, the patient was assumed to be dead.

In order to target early post hospital problems related to critical illness that could potentially result in readmission, appointments were targeted for 2–4 weeks after the patient had returned home. Patients who declined to schedule often cited a reason for doing so, which was recorded. Appointment attendance was collected, and the reason for failed attendance was logged when known (e.g., hospital readmission). Patients were excluded from analysis if they did not survive their index hospitalization, regardless of eligibility following initial screen.

The ICU-RC Visit

The ICU-RC is staffed by an interprofessional team modeled after the disciplines that work together in the medical ICU at VUMC: acute care nurse practitioner, ICU pharmacist, pulmonary intensivist, case manager, and neuropsychologist. Patients were seen individually, after which an interprofessional team conference was held to develop and execute a comprehensive treatment plan. See Table 1 for a description of assessments performed in clinic.

Table 1.

Patient Assessments Performed in the Intensive Care Unit Recovery Center (ICU-RC)

Test	Purpose
Neuropsychological exam (tools used may include the Montreal Cognitive Assessment, the Hospital Anxiety and Depression Scale, the Post Traumatic Stress Disorder checklist, Trails A and B, and the Mini Mental Status Assessment) followed by brief, focused psychotherapy.	Screen for cognitive deficits and psychological disorders related to critical illness or its therapies. Perform a “therapeutic assessment” – a focused therapeutic intervention guided by information gained from cognitive testing. In this approach, focus is not only on test outcomes but on what the process the patient employs reveals about their deficits and their current and future functioning.
Spirometry	Screen for airway problems and undiagnosed lung disease.
6-minute walk test	Assess physical function, motivate additional physical therapy via quantifiable metric to aide in goal setting.
Vital signs	Rule out oxygenation, blood pressure or heart rate derangements associated with medications or symptomatic presentation.
Medical history and exam	Ensure appropriate recovery trajectory of medical illness, screen for ICU related problems with attention to wound and trach care, venous access device removal, and preventative care (e.g., immunizations, smoking cessation, sleep hygiene, nutrition).
Medication reconciliation	Stop inappropriate meds, start necessary meds, adjust dosing where necessary, assure patient can afford meds and is taking correctly.
Case management evaluation	Ensure health insurance or community resource alternatives, supplemental oxygen, outpatient physical therapy, home health, durable medical equipment, and a primary care provider, as needed.
Assessment and survivorship plan	Debrief critical illness; discuss next steps, goals, and return to work/school. In this context, prioritize the role of family members in recovery.
Team conference	Gather data, discuss new knowledge about ICU recovery, maximize interdisciplinary approach to problems.
Report and plan to primary provider	Ensure adequate transition to outpatient care and long term recovery.

Spirometry and a 6 minute walk test (if able) were conducted. Then, a detailed history and physical was completed by a nurse practitioner with special attention to sequelae of critical illness, including tracheostomy, respiratory insufficiency, indwelling catheters, neuromuscular weakness, difficulties with activities of daily living (ADL), and wounds. A review of the patient’s hospitalization was performed; ongoing problems, new complications, and support systems were assessed. The pharmacist completed a medication review including medication reconciliation, interview, and counseling [Annals of Pharmacotherapy 2018, in press]. Screening for cognitive impairment, PTSD, anxiety, and depression was performed by a neuropsychologist or counselor, who then provided a brief, focused, therapeutic assessment (an intervention in which assessment data was employed to give targeted feedback and achieve therapeutic ends) [51]. Global cognitive functioning was assessed using the Montreal Cognitive Assessment (MoCA). Attention and executive functioning were assessed with Trailmaking Tests A and B, respectively [52]. Depression and anxiety were assessed with the Hospital Anxiety and Depression Scale (HADS) [53]. PTSD was assessed with the Post-Traumatic Stress Checklist (PCL) [54]. In select instances, alternative tools were used and on occasion, patients were not formally evaluated with outcome instruments but rather with a clinical interview. Tools were selected for their coverage of relevant domains, psychometric properties, and sensitivity in the detection of deficits [55].

Any new difficulties with ADLs were reviewed. If indicated for safety or to optimize rehabilitation, medical devices, support services or monitoring equipment were requested by the case manager.

A collaborative review of team members’ findings was used to develop a concise assessment and plan, which was communicated to the patient and sent to the primary care provider to ensure optimal transition to outpatient care.

Statistical Analysis

Categorical data are reported as frequency and percentages and continuous data are reported as median (interquartile range). Statistical analyses were performed with R software version 3.3.0 (R Development Core Team Vienna, Austria; http://www.rproject.org).

RESULTS

Of 307 referrals, 62 patients completed a visit to the ICU-RC. Patients were referred from 5 types of ICUs; 90% were from the medical ICU and were referred by ICU-RC team members. Patient recruitment is outlined in Figure 1.

Figure 1. Flow diagram of patient recruitment and follow-up in the Vanderbilt Intensive Care Unit Recovery Center (ICU-RC).

Definition of abbreviations: ICU= intensive care unit; SNF=skilled nursing facility;

^aPatients could meet more than one exclusion criteria for the clinic.

^bPatients could have more than one reason for not being scheduled in the ICU Recovery Center.

^c56 patients had complete data collected (i.e., were seen by all providers).

Baseline Demographics

Baseline demographics are presented in Table 2. Median age was 55 (IQR, 43, 65). Patients were predominantly Caucasian. Respiratory failure requiring mechanical ventilation, sepsis, and delirium were the most common referral criteria. Severity of illness was high, with a median Sequential Failure of Organ Assessment (SOFA) score of 10 (IQR, 7, 12). ICU and hospital length of stay were 8 days (IQR, 4, 14.8) and 15 days (IQR, 9.2, 25.8), respectively. The largest proportion of patients eligible for follow-up care was discharged home rather than to another medical facility (inpatient rehabilitation, skilled nursing or long term acute care). The median time from discharge until clinic appointment was 29 days (IQR, 18, 57). The majority of patients visited the ICU-RC one time.

Table 2.

Baseline Demographics of Survivors Who Were Referred vs Attended the ICU-RC^a

Demographic	Survivors Referred (n=218)b	Survivors Attended (n=62)c
Age, years	55 (43, 65)	49.5 (36, 57)
Sex, male	105 (48%)	34 (55%)
Race, White	177 (81%)	53 (86%)
SOFA Score	10 (7, 12)	10 (7, 12)
Referral ICU type
MICU	197 (90%)	54 (87%)
Trauma	7 (3%)	3 (5%)
CVICU	6 (3%)	2 (3%)
SICU	4 (2%)
Other	4 (2%)	3 (5%)
ICU-RC Referral Criteria d
Respiratory Failure	166 (76%)	53 (90%)
Delirium during ICU Stay	162 (74%)	50 (81%)
Sepsis/Septic Shock	147 (67%)	34 (58%)
Shock, other	88 (40%)	18 (30%)
ICU Length of Stay, days	8 (4, 15)	8 (5, 21)
Hospital Length of Stay, days	15 (9, 26)	18 (12, 28)
Discharge Disposition
Home with Self-Care	57 (26%)	22 (36%)
Home with Home Health	41 (19%)	11 (17%)
Inpatient Rehabilitation	41 (19%)	17 (27%)
Skilled Nursing Facility	38 (17%)	6 (10%)
Long Term Acute Care	16 (7%)	5 (8%)
Home with Hospice	11 (5%)
Left Against Medical Advice	5 (2%)	1 (2%)
Inpatient Hospice	3 (1%)
Inpatient Psychiatric Hospital	2 (1%)
Other	4 (2%)

Definition of abbreviations: CVICU=Cardiovascular Intensive Care Unit; ICU=Intensive Care Unit; ICU -RC=Intensive Care Unit-Recovery Center; MICU=Medical Intensive Care Unit; SICU=Surgical Intensive Care Unit; SOFA = Sequential Organ Failure Assessment.

^aData presented as n (%) or median (interquartile range).

^bIncludes all survivors referred to the ICU-RC.

^cIncludes only survivors who attended the ICU-RC.

^dReferral criteria were not mutually exclusive.

Characteristics of the ICU-RC Evaluation Cohort

Clinical characteristics of the 62 patients seen in the ICU-RC are presented in Table 3. Sixty-four percent had cognitive impairment. MoCA was the most widely employed cognitive test; the median score was 21 (IQR, 17, 25), comparable to median scores in early Alzheimer’s disease [56]. The majority of difficulties were in visuospatial areas such as the Clock Drawing Task and the Cube, reflecting disturbances in executive function. Anxiety alone was present in 32% of patients tested (n=19); 27% had depression alone (n=13). Two patients (3%) had both anxiety and depression. PTSD was rare, occurring in only 3 of the patients tested (5%). Of these, one had concurrent anxiety, and one had concurrent depression. Four patients had symptoms that reflected neither anxiety, depression, nor PTSD but rather acute reactions to situational stress (adjustment disorder).

Table 3.

Clinical Characteristics of Intensive Care Unit Recovery Center (ICU-RC) Patients^a

Characteristic	(n=62)
Time from D/C to ICU-RC Appt, d	29 (18, 57)
Cognitive Impairment (n=59)b	38 (64%)
MOCA	21 (17, 25)
Anxiety alone (n=59)b	19 (32%)
Depression alone (n=59)b	13 (22%)
Anxiety with Depression	2 (3%)
Adjustment Disorder (n=59)b	4 (7%)
PTSD any (n=59)b	3 (5%)
PTSD alone	1 (2%)
PTSD with anxiety	1 (2%)
PTSD with depression	1 (2%)
6 Min Walk Test Completed
Yes	41 (66%)
Patient Unable to Complete	17 (27%)
No (not done, other)	4 (6%)
6 Min Walk % Predicted (n=41)	56 (45, 68)
Tobacco Use Since D/Cc
Never Smoker	27 (44%)
No	26 (42%)
Yes	9 (15%)
Weight change from baseline, kg	−2.4 (−10.3, 0.3)
Readmitted within 6 months d	19 (31%)
Time to readmission, d	33 (9.5, 73)
Died within 6 monthse	5 (8%)
Patient Driving on Day of ICU-RC Visit
No	34 (55%)
Yes	15 (24%)
Never Driver	9 (15%)
Unknown	4 (6%)
Patient Returned to Work
No	40 (65%)
Not Previously Working	15 (24%)
Yes	7 (11%)
Difficulty with ADLf
Ambulating	33 (53%)
Feeding	11 (18%)
Personal Hygiene	10 (16%)
Dressing	7 (11%)
Unknown	7 (11%)
Bathing/Showering	5 (8%)
Toileting	3 (5%)
No New Impairments	17 (27%)

Definition of abbreviations: ADL=Activities of Daily Living; Appt=appointment; d=day s; D/C=discharge; kg=kilograms; Min=minute; MOCA=Montreal Cognitive Assessment; PTSD=Post-traumatic Stress Disorder; #=number

^aData presented as n (%) or median (interquartile range).

^b59 of the 62 (95.2%) patients completed a neuropsychological evaluation.

^cAmong patients who were prior tobacco users.

^dSame hospital readmission during the consecutive 6 months following index hospitalization discharge.

^eKnown to have died within 6 months of index hospitalization.

^fPatients can have more than one difficulty with ADL.

Forty one patients (66%) completed a 6 minute walk test; the remainder were unable to walk due to physical limitations. Of those who could walk, the median 6 minute walk distance was 56% predicted. Smoking cessation had occurred in 26 prior smokers (42%). Most patients had lost weight from pre-hospitalization baseline (median −2.4 kilograms (IQR, −10.3, 0.3)). Thirty four patients (55%) who previously drove were not driving at the time of their ICU-RC visit. Nearly two thirds of patients (40, 65%) who were previously working had not returned to work. Difficulty with ADL was present in most patients; only 27% reported no new difficulties. The most commonly reported ADL deficit was in ambulation (53%). Nineteen (31%) were readmitted within 6 months of index hospitalization discharge; median time to first readmission was 33 days (IQR, 9.5, 73). Five patients (8%) died within 6 months of their index admission; median days from discharge until death was 56 (IQR, 50, 56).

Interventions Provided at the ICU-RC

Interventions provided in the ICU-RC included new referral to or coordination with primary care, 33 (54%), subspecialty care, 32 (53%), or physical/occupational therapy, 18 (30%); smoking cessation counseling and treatment, 16 (26%); assistance with obtaining durable medical equipment, 14 (23%), oxygen, 7 (12%), or non-invasive ventilation, 5 (8%); referral to government assistance programs, 5 (8%); completion of medical paperwork, 5 (8%); support group referral, 4 (7%); provision of childcare services, 1 (2%); and other, 2 (3%). All patients seen by the pharmacist had at least one intervention. The median number of pharmacy interventions, including but not limited to medication discontinuation, new medication start, prevention of adverse drug events (ADEs), treatment of ADEs, change in medication dose, administration of vaccinations, and laboratory monitoring, was 4 per patient (IQR, 2, 5) [Annals of Pharmacotherapy 2018, in press].

DISCUSSION

An ICU-RC is feasible and provides opportunity to maximize recovery and minimize the adverse effects of critical illness in a high-risk population. We observed a high prevalence of impairments including cognitive deficits, disorders of anxiety and mood, physical debility, medication related problems, and changes in lifestyle with the potential to affect socioeconomic status, underscoring the magnitude of difficulties patients experience in the early post ICU discharge period.

Existing data describing the design and implementation of ICU-RCs is limited. In 2006, a survey of ICU-RCs in the UK demonstrated that, of the 266 ICUs that responded to the survey, 80 (30%) had an ICU-RC [36]. Half of the clinics were nurse led; a third offered psychology and physical therapy. Three randomized studies in Europe have evaluated post ICU programs [37, 40, 41, 57]; effects on health-related quality of life (HRQOL) and/or physical recovery have been mixed. Schmidt and colleagues found that ICU survivors receiving a post ICU primary care provider intervention had fewer impairments in ADLs, better physical functioning, and fewer sleep complaints [41], but neither Jensen et al nor Cuthbertson et al saw a difference in HRQOL [29, 40]. There are striking differences between health care in the US and Europe, both during and after the ICU [58]. The US has more ICU beds, but US patients are more likely to need post-discharge care and are more often sent to a facility rather than home [58]. In contrast to European systems, US patients are less likely to have insurance or access to rehabilitation services [40, 59]. And, in contrast to the UK, there are very few ICU-RCs; when we designed the clinic described here, there were none. Given these and other cultural differences, ICU-RC models likely need to be adapted to the specific population and societal needs of a given country or region.

An ICU-RC can address many of the needs of ICU survivors, and be sustained despite the challenges of the US health care system. However, the beneficial effects associated with this or any model of post ICU care remain unclear [2–13, 60]. Barriers to post ICU follow-up include inadequate resource allocation (staff, space, and personnel time), the logistical challenges of recruiting and retaining a debilitated, high risk patient population, gaps in our knowledge of how to ensure maximum recovery in survivors of critical illness, and lack of patient and provider awareness regarding the sequelae of critical illness [43]. These must be addressed in order to provide effective post ICU care.

Significant physical, cognitive, and mental health problems are prevalent among ICU survivors, with numerous studies [7, 9, 14, 16–20, 23–27, 30, 31, 48, 61–63] reporting high rates of human suffering and varied deficits. These studies have been done with research populations, and questions persist regarding their representativeness. Our findings, in a pragmatic clinical population, demonstrate rates of disability comparable to those reported in research studies. This is particularly true with respect to cognitive impairment, anxiety, and depression, domains in which our patients reported difficulties similar to those previously reported [15, 19].

In contrast, the rates of PTSD we observed were low. Debate continues about how common PTSD is after critical illness, and at least one recent study has suggested that PTSD might be less common than widely believed [64]. Two possibilities merit consideration with regard to the prevalence we observed. First, a significant portion of individuals with anxiety symptoms several weeks after discharge may display more distinct PTSD symptoms over time (delayed onset) [65], as symptoms become less amorphous and more easily interpretable. Second, it may be that individuals with PTSD after critical illness are predisposed – due to marked symptoms of avoidance, prevalent in those with medically induced PTSD – not to attend an ICU-RC based at the same hospital many presumably associate with traumatic memories [66].

Our study has both strengths and limitations. This is a descriptive study of a pilot intervention reaching a relatively small number of self-selected patients; it did not seek to determine the effectiveness of an interprofessional follow-up intervention. However, it is one of only a few investigations to describe a clinical population of ICU survivors seen in an ICU-RC setting, and highlights both the feasibility of such an approach and the substantial deficits experienced by ICU survivors. An interprofessional approach to rounding has been linked to positive outcomes in inpatient populations [67, 68]. However, no model has been recommended as the standard of care in the post ICU recovery period. Our clinical intervention design was based on feedback from patients, dialogue with expert clinicians, and research, yet it is a single model among many that could be developed and explored. For example, occupational therapists and physical therapists have much to offer this population and their direct involvement in a follow-up clinic might not only be important but, for some patients, imperative.

As ICU-RCs become more prevalent, determining whether patient-centered outcomes, including readmissions and mortality, are improved by this type of intervention is vitally important. Cost has been cited as a barrier, but the potential cost savings of an effective, timely intervention have not been explored. Future studies should seek to elucidate the ideal model as well as define long term outcomes associated with the implementation of ICU-RCs.

Emerging Insights and Evolving Issues

Even as we continue our efforts to formally study a wide array of processes and outcomes related to the Vanderbilt ICU Recovery Center, we have made a number of anecdotal observations, and our insights regarding the clinic continue to evolve. We have encountered a number of surprising findings – for example, we have recognized that the sheer number of potentially inappropriate medications (PIMS) and actually inappropriate medications (AIMS) taken by patients is even greater than we anticipated; that problems driving are extremely common in ICU survivors and a significant concern among family members of patients; and that the distribution of PTSD symptoms after the ICU is often marked by either a near complete absence of symptoms or the presence of symptoms that are very severe. We have learned that while the ICU-RC may be a key element of post-discharge care, it is but one element and the interventions performed there are perhaps most effective when married to other complementary elements, such as a peer support program for ICU survivors, that entail regular and consistent interaction with other ICU survivors and their families [69]. We have further recognized that the individual needs of our patients vary widely depending on what stages of recovery they are in – as such, we continue to try to find ways to tailor our interventions beyond a simple “one size fits all” model and toward an approach that is personalized to the needs of the specific patient. Patients are increasingly coming to us at time points remote (years) from hospital discharge and it appears that the services they need are vastly different from those required in the weeks and months after discharge.

Future Directions

We have observed the potential benefits of a model of care grounded in an ICU Recovery Center but recognize that future models could look substantially different than the one that we are employing and the ones that are rapidly proliferating across North America. While our “best guesses” are necessarily speculative, we anticipate several key future directions: 1) Integration of Families in Treatment: Literature is emerging and our clinical experience is confirming that ICU survivors do not suffer in a vacuum. On the contrary, their difficulties profoundly impact their families in ways both obvious and subtle. Focused efforts must increasingly be made to engage the multifaceted needs of families. 2) Telemedicine: A key limitation to participation in the Vanderbilt ICU Recovery Center and in recovery programs more generally involves distance – patients are often transported to the ICU from rural communities hundreds of miles away and returning to a tertiary center for elective treatment after discharge is prohibitive. Telemedicine offers an intriguing and scalable solution to barriers involving access to care and should increasingly be explored and implemented in the future. 3) Multicenter study in specific healthcare systems. Since the founding of our clinical program, inquiries about post-ICU follow up have escalated exponentially, prompting us to create, together with the Society of Critical Care Medicine, a learning collaborative of centers pursuing the development and implementation of ICU recovery programs across the US and the UK [70]. This collaboration has already allowed for significant real time learning through the sharing of clinical experience, and will be a fertile laboratory for further study of post-ICU models of care.

In conclusion, in an attempt to improve patient safety and optimize recovery, we developed this ICU-RC and undertook this cohort description of the first several years of the process to provide others a template upon which to build. The high prevalence of impairments demonstrated, including cognitive impairment, anxiety, depression, and physical dysfunction, mirror those found in research studies of the post ICU period. The delivery of a wide range of interventions to address these impairments in a high risk, vulnerable population is feasible and sustainable. An interprofessional approach appears to have many potential benefits in this model of care. Further studies are needed to determine the preferred model and outcomes associated with implementation of an ICU-RC. Given the large body of research demonstrating post ICU complications, it is time to pin down strategies to close the “Know-Do” gap in post ICU recovery.

Highlights.

• An outpatient intervention for recovery after critical illness (ICU Recovery Center) is proposed.

• The development, implementation, and characteristic patient population of an ICU-RC in the United States is described.

• Patients recovering from critical illness in a pragmatic clinical population suffer a wide range of impairments after hospital discharge.

• Post-ICU recovery programs have not been widely studied or adopted despite the scope of these problems.

• An ICU-RC is feasible and has the potential to minimize post intensive care syndrome (PICS) and maximize recovery.