Improving long-term outcomes after discharge from intensive care

unit: Report from a stakeholders’ conference*

Dale M. Needham, MD, PhD; Judy Davidson, DNP, RN; Henry Cohen, PharmD; Ramona O. Hopkins, PhD;
Craig Weinert, MD, MPH; Hannah Wunsch, MD, MSc; Christine Zawistowski, MD;
Anita Bemis-Dougherty, PT, DPT; Susan C. Berney, PT, PhD; O. Joseph Bienvenu, MD, PhD;
Susan L. Brady, MS; Martin B. Brodsky, PhD; Linda Denehy, PT, PhD; Doug Elliott, RN, PhD; Carl Flatley, DDS;
Andrea L. Harabin, PhD; Christina Jones, RN, PhD; Deborah Louis, RN; Wendy Meltzer, JD;
Sean R. Muldoon, MD, MPH, MS; Jeffrey B. Palmer, MD; Christiane Perme, PT, CCS;
Marla Robinson, OTR/L, MSc, BCPR; David M. Schmidt, MD, PhD; Elizabeth Scruth, RN; Gayle R. Spill, MD;
C. Porter Storey, MD; Marta Render, MD; John Votto, DO; Maurene A. Harvey, RN, MPH, FCCM

Background: Millions of patients are discharged from intensive Measurements and Main Results: Three major themes
care units annually. These intensive care survivors and their emerged from the conference regarding: (1) raising awareness
families frequently report a wide range of impairments in their and education, (2) understanding and addressing barriers to
health status which may last for months and years after hospital practice, and (3) identifying research gaps and resources. Postin-
discharge. tensive care syndrome was agreed upon as the recommended
Objectives: To report on a 2-day Society of Critical Care Med- term to describe new or worsening problems in physical, cogni-
icine conference aimed at improving the long-term outcomes tive, or mental health status arising after a critical illness and
after critical illness for patients and their families. persisting beyond acute care hospitalization. The term could be
Participants: Thirty-one invited stakeholders participated in applied to either a survivor or family member.
the conference. Stakeholders represented key professional orga- Conclusions: Improving care for intensive care survivors and
nizations and groups, predominantly from North America, which their families requires collaboration between practitioners and
are involved in the care of intensive care survivors after hospital researchers in both the inpatient and outpatient settings. Strate-
discharge. gies were developed to address the major themes arising from the
Design: Invited experts and Society of Critical Care Medicine conference to improve outcomes for survivors and families. (Crit
members presented a summary of existing data regarding the po- Care Med 2012; 40:502–509)
tential long-term physical, cognitive and mental health problems KEY WORDS: aftercare; caregivers; continuity of patient care;
after intensive care and the results from studies of postintensive care critical care; follow-up studies; intensive care units; outcome
unit interventions to address these problems. Stakeholders provided assessment; patient care planning; patient care team; postinten-
reactions, perspectives, concerns and strategies aimed at improving sive care syndrome; stress disorders, post-traumatic; survivors
care and mitigating these long-term health problems.

*See also p. 681. tation (MBB), Johns Hopkins University, Baltimore, MD; ative Medicine (CPS), Boulder, CO; Inpatient Evaluation
From the OACIS Group, Pulmonary and Critical Physiotherapy (LD), Melbourne School of Health Sci- Center (MR), Veterans Affairs Medical Center–
Care Medicine, and Physical Medicine and Rehabilita- ences, University of Melbourne, Melbourne, Australia; Cincinnati, and Pulmonary/Critical Care/Sleep, Univer-
tion (DMN), Johns Hopkins University, Baltimore, MD; Faculty of Nursing (DE), University of Technology, Syd- sity of Cincinnati College of Medicine, Cincinnati, OH;
Nursing Excellence and Advanced Practice (JD), ney, Australia; Sepsis Alliance (CF), Tampa, FL; Divi- Hospital for Special Care (JV), New Britain, CT; Critical
Scripps Mercy Hospital, San Diego, CA; Pharmacother- sion of Lung Disease (ALH), National Heart, Lung, and Care Educator and Consultant and Past President So-
apy (HC), Kingsbrook Jewish Medical Center, Wood- Blood Institute, Bethesda, MD; Critical Care Rehabili- ciety of Critical Care Medicine (MAH), Lake Tahoe, NV.
mere, NY; Medicine, Pulmonary, and Critical Care tation (CJ), Whiston Hospital, Prescot, United Kingdom; Dr. Needham has received grant support from the
(ROH), Intermountain Medical Center, and Psychology Critical Care (DL), Kaiser Sunnyside Medical Center, National Institutes of Health. Dr. Bienvenu has received
and Neuroscience Center, Brigham Young University, Clackamus, OR; Illinois Citizens for Better Care (WM),
funding from the National Institutes of Health. Ms.
Salt Lake City, UT; Pulmonary, Allergy, Critical Care, Chicago, IL; Hospital Division (SRM), Kindred Health-
Louis is employed by Kaiser Permanente. Dr. Muldoon
and Sleep Medicine (CW), Clinical Outcomes Research care, Louisville, KY; Physical Medicine and Rehabilita-
Center, University of Minnesota, Minneapolis, MN; An- tion (JBP), Otolaryngology, and Functional Medicine, is employed by and has stock ownership in Kindred
esthesiology and Epidemiology (HW), Columbia Univer- Johns Hopkins University, Baltimore, MD; Physical Healthcare. The remaining authors have not disclosed
sity, New York, NY; Pediatrics (CZ), Mount Sinai Kravis Therapy (CP), The Methodist Hospital, Houston, TX; any potential conflicts of interest.
Children’s Hospital, Brooklyn, NY; Department of Prac- Occupational Therapy (MR), University of Chicago For information regarding this article, E-mail:
tice (ABD), American Physical Therapy Association, Medical Center, Chicago, IL; Pulmonary and Critical [email protected]
Alexandria, VA; Physiotherapy Department (SCB), Aus- Care (DMS), Kaiser Sunnyside Medical Center, Clacka- Copyright © 2012 by the Society of Critical Care
tin Heath, Melbourne, Australia; Psychiatry and Behav- mus, OR; Northern California Quality Department (ES), Medicine and Lippincott Williams & Wilkins
ioral Sciences (OJB), Johns Hopkins University, Balti- Kaiser Permanente, San Jose, CA; Cancer Rehabilita- DOI: 10.1097/CCM.0b013e318232da75
more, MD; Research (SLB), Marianjoy Rehabilitation tion Program (GS), Rehabilitation Institute of Chicago,
Hospital, Roselle, IL; Physical Medicine and Rehabili- Chicago, IL; American Academy of Hospice and Palli-

502 Crit Care Med 2012 Vol. 40, No. 2

T his report summarizes the ing preparation of this report. Prepara- administrators, third-party payers, and
findings of a conference con- tion of the report was an iterative process policymakers.
vened by the Society of Criti- that incorporated input, and received ap-
cal Care Medicine on Septem- proval, from all attendees. Nomenclature for Post-ICU
ber 27 and 28, 2010. The purpose of the Impairments
conference was to inform stakeholders Raising Awareness and
from the rehabilitation, outpatient, and Education The major categories of potential post-
community care settings of the long- ICU morbidities include new or worsened
term consequences of critical illness, and Attendees believed that establishing impairments in physical, cognitive, and
to initiate improvements across the con- basic nomenclature to describe post-ICU mental health. Neuromuscular weakness is
tinuum of care for intensive care survi- impairments is fundamental to advance an important physical impairment (10 –12).
vors (1) and their families (2). The spe- awareness and facilitate education. An expert consensus framework for ICU-
cific goals established when planning the Groups targeted for education included related neuromuscular weakness has been
conference are described in Table 1. clinicians, survivors, families, healthcare established (13). This framework recom-
The long-term consequences of criti-
cal illness are growing in importance as
the aging population increases demand Table 1. Goals of the conference
for critical care and the short-term mor-
Understand the long-term outcomes of intensive care patients and their families, and identify gaps
tality after critical illness decreases (3–5). in the literature with respect to these outcomes
Annually in the United States, millions of Identify stakeholders for sharing perspectives on the scope and nature of these long-term outcomes
patients are surviving critical illness (6). and develop relationships that lead to collaboration
Many existing studies demonstrate the Identify strategies and funding sources to better meet patient and family needs, including
physical, cognitive, and mental health professional education, resource development, community outreach, and research
Explore how stakeholders can contribute to improving long-term outcomes of intensive care
impairments experienced by some inten-
patients and their families after discharge from the hospital
sive care survivors, and the mental health
impairments experienced by some family
members (2, 7–9). A literature review
Table 2. Conference attendees
identified intensive care unit (ICU)-based
interventions that may reduce these im- Organization or Perspective Represented Representative’s Name
pairments (9). However, much less is
known about post-ICU interventions for Society of Critical Care Medicine Maurene Harvey, RN MPH (Co-Chair)
improving survivor and family outcomes. Conference Planning Committee Judy Davidson, DNP, RN (Co-Chair)
Hence, the conference brought together Henry Cohen, PharmD
Ramona O. Hopkins, PhD
ICU practitioners and stakeholder groups Dale M. Needham, MD, PhD
that provide care after ICU discharge. Ef- Craig Weinert, MD
forts were made to obtain input from Hannah Wunsch, MD, MSc
international experts along with perspec- Christine Zawistowski, MD
tives from a range of predominantly Invited external experts O. Joseph Bienvenu, MD, PhD
Christina Jones, RN, PhD
North American disciplines, groups, and Linda Denehy, PT, PhD
professional organizations outside of the Susan Berney, PT, PhD
critical care community (Table 2). Doug Elliott, RN, PhD
The conference began with presenta- American Physical Therapy Association Anita Bemis-Dougherty, PT (Associate Director,
tions aimed at informing attendees of po- Department of Practice)
Christiane Perme, PT, CCS (Member)
tential long-term consequences of critical American Academy of Hospice and Porter C. Storey, MD (Executive Director)
illness and the results of post-ICU inter- Palliative Medicine
ventional research. Thereafter, stake- American Academy of Physical Medicine Gayle R. Spill, MD (Member)
holder input and perspectives were and Rehabilitation
shared regarding the conference goals. American Occupational Therapy Marla Robinson, OTR/L, MSc, BCPR (Member)
This report does not specifically review Association
America Speech-Language-Hearing Susan Brady, MS (Member)
the long-term consequences of critical Association Martin B. Brodsky, PhD (Member)
illness, as summarized elsewhere (Table Association of Academic Physiatrists Jeffrey B. Palmer, MD (Member-at-large)
3) (2, 7, 9). This report is organized Illinois Citizens for Better Care Wendy Meltzer, JD (Executive Director)
around three major themes developed Kaiser Permanente Healthcare System Deborah Louis, RN
from the conference discussion: raising Elizabeth Scruth, RN
David M. Schmidt, MD, PhD
awareness and education; understanding Acute Long-Term Hospital Association Sean Muldoon, MD, MPH, MS (Member)
and addressing barriers to best practice; National Association of Long-Term John Votto, DO (Immediate Past President)
and identifying research gaps and re- Hospitals
sources. These themes and the entire National Heart, Lung, and Blood Andrea Harabin, PhD (Senior Scientific Advisor)
conference report were based on a con- Institute
Sepsis Alliance Carl Flatley, DDS (Founder and Chairman)
sensus of conference attendees that was Veterans Administration Healthcare Marta Render, MD (Chief, Inpatient Evaluation Center)
developed and documented during the System
conference and reviewed, in detail, dur-

Crit Care Med 2012 Vol. 40, No. 2 503

Table 3. Selected potential long-term patient and family outcomes after intensive carea

Complication Description Selected Risk Factors Natural History

Patient outcomes
Pulmonary Impairment in spirometry, lung Diffusion capacity: duration of mechanical Generally mild impairment with
volumes, and diffusion ventilation improvement during first year, but can
capacity persist 5 yrs or more
Neuromuscular/ICU- Includes critical illness Hyperglycemia Polyneuropathy may recover more slowly
acquired weakness polyneuropathy and than myopathy; can extend to 5 yrs
myopathy
Systemic inflammatory response
syndrome
Sepsis
Multiorgan dysfunction
Disuse atrophy Immobility/bed rest
Physical function Impairment in activities of daily Systemic corticosteroids Some improvement in ADL within
living (ADL/IADL) and 6-min ICU-acquired illnesses months, but impairments may be seen
walk distance Slow resolution of lung injury in ADL at 1 yr and in IADL at 2 yrs
Age Long-lasting impairment in 6-min walk
Preexisting IADL impairment distance vs. population norms
Psychiatric Depression Traumatic/delusional memories of ICU, May decrease over first year
sedation, psychiatric symptoms at
discharge, impairment of physical
function
Posttraumatic stress disorder Sedation, agitation, physical restraints, Little improvement in first year
traumatic/delusional memories
Anxiety Unemployment, duration of mechanical May persist past first year
ventilation
Overall risk factors: female gender,
younger age, less education, and pre-
ICU psychiatric symptoms, and
personality
Cognitive Impairments in memory, Lower pre-ICU intelligence Significant improvement during first year,
attention, executive function, ICU delirium with residual deficits up to 6 yrs later
mental processing speed, Sedation
visuo-spatial ability Hypoxia
Glucose dysregulation
Family outcomes
Psychiatric Depression Overall risk factors: female gender, Depression and anxiety decrease over
younger age, less education, pre-ICU time, but are higher than population
psychiatric symptoms, and personality, norms at 6 months
distance to hospital, restricted visiting
Posttraumatic stress disorder Dissatisfaction with communication, ICU Posttraumatic stress disorder and
physician perceived as “uncaring,” complicated grief can persist 4 yrs or
passive preference for decision-making, more after death or discharge and may
mismatch between involvement in not decrease over time
decision-making and preference
Anxiety Severity of illness not associated with
development of symptoms
Complicated grief Complicated grief is worse when family
does not have knowledge of patient’s
wishes
In pediatric ICU, paternal stress after
discharge is associated with child stress
in pediatric ICU

ADL, activities of daily living; IADL, instrumental activities of daily living; ICU, intensive care unit.
a
Adapted, with permission, from previous publication (9).

mends the term “ICU-acquired weak- initions for “critical illness polyneurop- For cognitive impairments after critical
ness” to describe diffuse, symmetric, athy,” “critical illness myopathy,” and illness, no widely accepted terminology exists
generalized muscle weakness (detected “prolonged neuromuscular blockade” but they are commonly referred to as “long-
by physical examination and meeting primarily based on electromyography term cognitive impairments.” Psychiatric
specific strength-related criteria) that and nerve conduction studies. The term symptoms occurring after critical illness (e.g.,
develops after the onset of critical ill- critical illness neuromyopathy is rec- depression, anxiety, posttraumatic stress dis-
ness without other identifiable cause. ommended for patients with critical ill- order) should be classified and diagnosed us-
Among patients with ICU-acquired ness polyneuropathy and probable or ing existing sources (e.g., Diagnostic and Sta-
weakness, the framework provides def- definite critical illness myopathy. tistics Manual of Mental Disorders).

504 Crit Care Med 2012 Vol. 40, No. 2

 their ICU stay. Sudden acquisition of nu-
merous new and unrecognized functional
and cognitive impairments that have
complex multifactorial causes and un-
clear treatments can be confusing to sur-
vivors, families, and clinicians (9, 10, 17–
19). The current level of discharge
planning and communication with survi-
vors, families, and clinicians may be in-
adequate given our current knowledge of
the magnitude of post-ICU impairments
and patients’ potential stress and cogni-
tive impairment (20, 21). Furthermore,
there are important deficits in primary
care clinicians’ awareness and prepara-
tion to provide and coordinate care for
Figure 1. Postintensive care syndrome (PICS) conceptual diagram. ASD, acute stress disorder; PTSD,
survivors. Furthermore, outpatient
posttraumatic stress disorder.
providers are often unable to provide
feedback to ICU staff regarding survi-
vors’ long-term outcomes, creating a
Attendees agreed that given the high faceted tool kit (e.g., fact sheet, annotated potential missed opportunity for educa-
frequency of multiple impairments after bibliography, slide presentation). Identi- tion and process improvement for crit-
critical illness, awareness would be im- fying a famous ICU survivor to serve as a ical care clinicians.
proved by use of a single term to identify national spokesperson was identified as a
the presence of one or more of these im- long-term goal for raising awareness. Underutilization of Rehabilitation
pairments. The term “postintensive care Attendees identified specific barriers
Specialists and Potential
syndrome” (PICS) was agreed on as the to awareness. The largest barrier was the
recommended term to describe new or existence of “silos” among clinician Solutions
worsening impairments in physical, cogni- groups. These silos include the barriers Physiatrists (physicians specializing in
tive, or mental health status arising after between critical care and rehabilitation physical medicine and rehabilitation) and
critical illness and persisting beyond acute specialists working within the ICU as well other rehabilitation clinicians (physical
care hospitalization. The term could be ap- as gaps that occur, even within a clinical therapists, occupational therapists,
plied to a survivor (PICS) or family member specialty, when a patient moves from the speech language pathologists, and psy-
(PICS-F) (Fig. 1). Because of the co- ICU to ward and outpatient settings. chologists) attending the conference
occurrence of problems across these three Bringing together relevant organizations agreed that physiatry and the rehabilita-
categories of health status, attendees be- and clinical disciplines in this conference tion team are important for coordinating
lieved that a syndrome-based term is appro- is a first step in facilitating integration post-ICU care for survivors. Despite the
priate. Attendees hoped that creation of the across these silos. expertise of rehabilitation clinicians in
PICS term would facilitate awareness addressing impairments commonly expe-
among stakeholders, prompt screening for Understanding and Addressing rienced by survivors, several barriers to
these problems by outpatient clinicians, Barriers to Best Practice their integration in post-ICU care were
and lead to greater investigation into the identified. These clinician groups may
epidemiology, pathophysiology, treatment, Conference attendees identified barri- have limited awareness of the possible
and prognostication of the specific morbid- ers that challenge providing coordinated long-term consequences of critical ill-
ities that follow critical illness, as has oc- and comprehensive care for patients and ness. ICU survivors do not have a recog-
curred with the term “postcardiac arrest families after discharge. The major issues nized rehabilitation pathway, such as
syndrome” (14, 15). Through defining discussed were the context of medical traumatic brain injury or stroke. Existing
PICS, conference attendees did not intend care for ICU patients and the underutili- clinical training programs for rehabilita-
for investigation, diagnosis, and treatment zation of rehabilitation specialists in im- tion clinicians have limited exposure to
of specific impairments to be overlooked in proving post-ICU patient outcomes. critical care issues. Ideas for addressing
favor of any collective therapy for multiple these barriers include having a rehabilita-
impairments across all survivors and fami- The Context of Medical Care tion-focused group within the Society of
lies. Critical Care Medicine and having the re-
for ICU Patients
habilitation professional societies offer ed-
Awareness and Education Critical care has historically been pro- ucational programs and specialist certifica-
Strategies vided in isolation from patients’ primary tion in critical care/acute care for
care providers (16). ICU discharge notes interested members. ICU follow-up clinics
Several strategies were identified for and treatment plans frequently focus on also may help integrate critical care and
raising awareness and educating stake- organ-specific issues, with less focus on rehabilitation expertise to better-identify
holders, including publication of confer- functional impairments. Furthermore, and manage post-ICU morbidities (22).
ence proceedings, review articles (9) and on discharge from the ICU, survivors fre- Attendees recommended examining
newsletters, and the creation of a multi- quently have impaired memory regarding successful rehabilitation and recovery

Crit Care Med 2012 Vol. 40, No. 2 505

models from other areas in medicine, important barrier to admitting ICU sur- (29). Finally, giving survivors diaries doc-
such as stroke rehabilitation or oncology vivors for acute inpatient rehabilitation. umenting day-to-day details of their ICU
(23, 24). Similar to critical care, oncology For outpatient rehabilitation services, stay after their discharge demonstrated a
involves complex medical care and previ- funding-related barriers also exist. Survi- reduction in posttraumatic stress disor-
ously lacked focus on survivors’ long- vors may have limited or no insurance der and symptoms of anxiety and depres-
term outcomes. However, for more than coverage for these services, or they may sion (30, 31).
two decades, strong clinical and research be unable to arrange transportation for With this limited base of clinical trials
advocacy has focused interest on under- their appointments. An ideal setting for for outpatient management of survivors,
standing and improving the long-term survivors would be comprehensive mul- attendees identified important research
complications of cancer and oncology tidisciplinary outpatient ICU follow-up gaps related to the mechanisms and epi-
care. This effort has included better inte- clinics that provide assessments from all demiology of post-ICU morbidities and
gration of oncology clinical programs relevant clinician groups and that coor- specific patient subgroups and research
with primary care providers, and research dinate a plan for rehabilitation care. areas.
funding and leadership from the National However, such clinics often require fund-
Cancer Institute and the Centers for Dis- ing from foundations and disease-specific Mechanisms of Post-ICU
ease Control and Prevention (16). Reha- associations (e.g., cystic fibrosis, www. Morbidities
bilitation programs for chemical depen- cff.org/LivingWithCF/CareCenterNetwork/)
dence were also discussed given their to operate. Finally, insurance may not There is a lack of basic science and
emphasis on recovery as a process requir- cover the cost of medications prescribed translational research to understand
ing long-term commitment from survi- on discharge, resulting in nonadherence post-ICU impairments. Given the number
vors, family/friends, and clinicians. Fi- to treatment plans. of domains that may be impaired, the
nally, the expertise of the Veterans’ multiple likely mechanisms of injury as-
Affairs healthcare system in the investi- Identifying Research Gaps and sociated with critical illness and the va-
gation and management of traumatic Resources riety of possible interventions, conduct-
brain injury, posttraumatic stress disor- ing investigations with findings
der, and cognitive rehabilitation could be Uncertainty exists regarding the best applicable to all survivors is challenging.
approaches for providing post-ICU care. A Some mechanisms common to critical
applied to intensive care survivors and
small noncontrolled study of ICU survi- illness, such as hypoxia, hypotension, in-
families.
vors in the United Kingdom demon- flammation, glucose dysregulation, ca-
Funding for rehabilitation care poses
strated that a 6-wk program consisting of tabolism, and nutritional deficiencies,
several potential barriers to survivors’ re-
a 2-hr outpatient class and two unsuper- may lead to multiple impairments that
covery. Current requirements for insur-
vised home-based exercise sessions per interact with each other (32–38). Treat-
ance coverage for acute inpatient rehabil-
week showed feasibility and improvement ments provided during critical illness, in-
itation in the United States generally
in walk tests and anxiety and depression cluding endotracheal intubation, bed
specify that patients must be able to tol-
scores (25). A randomized trial of U.K. rest/immobilization, frequent use of ben-
erate a minimum of 15 hrs of rehabilita- ICU survivors evaluated a rehabilitation zodiazepines, other sedatives, and physi-
tion services per week. However, because manual that included self-directed exer- cal restraints, and interruption of the
of severe deconditioning, many ICU sur- cises, psychological advice, and informa- sleep–wake cycle also may contribute to
vivors may be unable to initially tolerate tion about the after-effects of critical ill- post-ICU impairments (30, 39 – 48).
this intensity of rehabilitation. Conse- ness and the importance of smoking Greater research is needed to understand
quently, they may be discharged to sub- cessation. This trial demonstrated im- common mechanisms and specific patho-
acute rehabilitation facilities once their proved physical function-related quality logic processes and associated mecha-
acute medical issues are resolved, or to of life at 6 months, a trend toward de- nisms of individual impairments.
long-term acute care hospitals if greater creased depression symptoms, and in-
medical specialization is required. The creased smoking cessation (26, 27). How- Epidemiology of Post-ICU
complexity and magnitude of the rehabil- ever, a randomized trial of home-based
itation needs of post-ICU patients may Impairments
physical rehabilitation (including a hand-
exceed the capabilities of some facilities book, in-person evaluation, and personal- Epidemiologic studies are needed to
and result in a delay or inability of survi- ized rehabilitation programming) dem- better define the scope of post-ICU im-
vors to reach their full potential during onstrated no benefits in physical pairments and associated costs of care.
recovery. function-related quality of life or second- Such data are needed at the individual
Regulatory requirements for acute in- ary outcomes in an Australian setting patient level to identify the specific types
patient rehabilitation in the United States (28). Important differences in patient of patients who are at greatest risk for
frequently require that at least 60% of characteristics (e.g., longer ICU stay in specific impairments and factors affecting
patients have a primary or secondary di- U.K. study) and less access to routine their trajectories of recovery. At the hos-
agnosis that is among a list of diagnoses rehabilitation therapy in the United King- pital level, research is needed to create a
deemed appropriate. Although anoxic dom may explain differences in findings “business case” for investment in rehabil-
brain injury and critical illness polyneu- compared with the Australian trial. Fur- itation services for ICU patients (49). Fi-
ropathy are qualifying diagnoses, other thermore, a randomized trial of nurse-led nally, at the regional and national level,
conditions common in ICU survivors, outpatient follow-up after ICU in the epidemiologic research is required to aid
such as delirium and ICU-acquired weak- United Kingdom demonstrated no benefit in health policy and planning, and in cov-
ness, are not. This 60% rule can be an in quality of life or secondary outcomes erage decisions by insurers.

506 Crit Care Med 2012 Vol. 40, No. 2

 Observational studies and phase II and Five additional research gaps were federally funded Patient-Centered Out-
III trials are required. Observational re- identified. First, a gap exists in under- comes Research Institute is being
search is needed to understand which pa- standing how to effectively and efficiently planned to provide direction in the selec-
tient subgroups may respond, may not screen patients for specific post-ICU im- tion and conduct of comparative clinical
respond, or may be harmed by interven- pairments to determine the need for fur- effectiveness research, which may influ-
tions such as intensive rehabilitation in, ther diagnostic work-up and treatment. ence clinical research directions for post-
or immediately after, the ICU. Prospec- Little evidence exists to support current ICU impairments. The Department of
tive cohort studies also allow simultane- informal recommendations (18) and U.K. Veterans Affairs also has funded ICU long-
ous examination of multiple exposure– guidelines for post-ICU care (65). Further term outcomes research and is a leader in
outcome associations to permit efficient investigation is needed regarding the de- research in posttraumatic stress disorder.
screening of potentially beneficial thera- sign of post-ICU interventions (29, 66). Finally, conference attendees agreed that
pies that can be more definitively inves- Second, despite the emerging body of re- their professional societies should explore
tigated in subsequent randomized trials search investigating the outcomes of adding critical illness-related rehabilitation
(50, 51). When compared to other litera- physical rehabilitation interventions con- to their research agenda for society-based
ture (e.g., oncology), critical care has lit- ducted during and after ICU stays (43, research funding opportunities.
tle research prospectively evaluating 66 –70), there is little research evaluating
long-term patient outcomes extending the best methods for survivor cognitive Limitations
beyond 1 or 2 yrs after critical illness rehabilitation and for psychiatric inter-
(16). The few existing studies with data ventions. Given the link between a pa- There are several limitations of this
beyond 2-yr follow-up have been instru- tient physical function and cognition and conference report. First, although re-
mental in demonstrating areas of true mental health (38, 71–73), interventions search and educational issues were dis-
long-term morbidities (52), and the po- and outcome measures should be coordi- cussed, a complete agenda for improving
tential recurrence of morbidities in sur- nated across the various post-ICU impair- these issues could not be developed dur-
vivors followed-up for 5– 8 yrs after ICU ments. Third, both psychological inter- ing the 2-day conference. Activities are
discharge (16, 53, 54). These existing ventions and complementary medicine currently ongoing within the organiza-
studies should be supplemented with ad- interventions (including cognitive behav- tions represented at the conference to
ditional investigations to understand the ioral therapy, music therapy, and guided address specific issues raised. Second,
generalizability of findings to larger sam- imagery) may be useful to address pain, neonatal, pediatric, and family aspects of
ples and other geographic settings. Fi- anxiety, and stress (74). Fourth, given PICS were not discussed in detail. This is
nally, information regarding post-ICU major sleep-related issues experienced by caused, in part, by underrepresentation
events experienced by survivors is neces- patients during and after ICU stays, the among conference attendees. Patient and
sary to more fully understand the post- connection of sleep disorders to physical, family perspectives are particularly impor-
ICU recovery process (55). cognitive, and mental health should be tant in better understanding the awareness
To help ensure comparability of find- evaluated (75). Finally, problems related and education issues reported on, including
ings across studies, attendees emphasized to the larynx, voice, and swallowing after use of terminology such as PICS. Third,
the importance of gaining consensus on a extubation and their connection to long- despite substantial efforts to engage other
standard set of outcome measures, which term impairments represent another re- stakeholders, there was also a lack of rep-
have been validated in survivors. Such search gap (39, 44, 76). resentation from primary care practitio-
consensus has been helpful in measuring ners, geriatricians, hospitalists, social
quality of life outcomes (56 –58), but Potential Research Resources workers, care coordinators, policymakers,
much more work is required for other and payers. Efforts are ongoing to engage
outcome measures. Instruments used in Given the multidisciplinary nature of these groups in future activities. Finally,
physical medicine and rehabilitation may critical illness and recovery, the National the methods used to create the conference
need to be evaluated. Expanding previous Institutes of Health support critical care report did not include formal consensus
systematic reviews of instruments used in research at a number of its 27 Institutes methods. The report was a synthesis of the
critical care and instruments’ test char- and Centers. A National Heart, Lung, and conference discussions that was revised and
acteristics (i.e., reliability, validity, and Blood Institute workshop focused on fu- agreed on by the predominantly North
responsiveness), along with a consensus ture clinical research priorities for acute American stakeholder groups and may not
conference, would be valuable (7, 59, 60). lung injury recommended that evaluat- be generalizable outside of this context. De-
ing the impact of interventions on long- spite this limitation, we believe the confer-
Specific Patient Subgroups and term quality of life and functional out- ence is unique in bringing together a
Research Areas comes should be a fundamental part of broad group of non-ICU professional or-
phase III trials (3). Other institutes with ganizations that actively contributed im-
Intensive care patient subgroups for interest in aspects of critical care re- portant perspectives regarding the con-
future research include geriatrics (61), search include aging (61), general medi- ference objectives.
pediatrics, and those with chronic critical cal sciences, nursing, allergy and infec-
illness or preexisting chronic disease tious diseases, child health, and diabetes, CONCLUSION
(physical, cognitive, or psychiatric). digestive and kidney diseases. One chal-
These groups have received relatively less lenge with National Institutes of Health With a growing number of patients
focus within existing ICU research. Strat- funding is the 5-yr cycle of funding, surviving critical illness, there is an ur-
egies to prevent post-ICU morbidities in which makes studies of long-term out- gent need to more fully address the long-
families are also underexplored (62– 64). comes difficult to design and fund. The term consequences of intensive care for

Crit Care Med 2012 Vol. 40, No. 2 507

survivors and their families. This Society complications of critical care. Crit Care Med 25. McWilliams DJ, Atkinson D, Carter A, et al:
of Critical Care Medicine conference fo- 2011; 39:371–379 Feasibility and impact of a structured, exer-
cused on improving these long-term con- 10. Herridge MS, Cheung AM, Tansey CM, et al: cise-based rehabilitation programme for in-
sequences and discussed three major is- One-year outcomes in survivors of the acute tensive care survivors. Physiother Theory
respiratory distress syndrome. N Engl J Med Pract 2009; 25:566 –571
sues in the field: raising awareness and
2003; 348:683– 693 26. Jones C, Skirrow P, Griffiths RD, et al: Reha-
education, including introducing the 11. De Jonghe B, Sharshar T, Lefaucheur JP, et bilitation after critical illness: A randomized,
term PICS to describe these long-term al: Paresis acquired in the intensive care controlled trial. Crit Care Med 2003; 31:
consequences, identifying barriers and unit: A prospective multicenter study. JAMA 2456 –2461
solutions for comprehensive post-ICU re- 2002; 288:2859 –2867 27. Jones C, Griffiths RD, Skirrow P, et al: Smok-
habilitation, and identifying research 12. Stevens RD, Dowdy DW, Michaels RK, et al: ing cessation through comprehensive critical
gaps and resources across the spectrum Neuromuscular dysfunction acquired in crit- care. Intensive Care Med 2001; 27:
from basic science to clinical research. ical illness: A systematic review. Intensive 1547–1549
Through the efforts of Society of Critical Care Med 2007; 33:1876 –1891 28. Elliott D, McKinley S, Alison J, et al: Health-
Care Medicine, in collaboration with con- 13. Stevens RD, Marshall SA, Cornblath DR, et related quality of life and physical recovery
al: A framework for diagnosing and classify- after a critical illness: A multi-centre ran-
ference stakeholder groups, these issues
ing intensive care unit-acquired weakness. domised controlled trial of a home-based
are being systematically addressed to help Crit Care Med 2009; 37:S299 –S308 physical rehabilitation program. Crit Care
improve the long-term outcomes of crit- 14. Holzer M: Targeted temperature manage- 2011; 15:R142
ical illness for survivors and their fami- ment for comatose survivors of cardiac ar- 29. Cuthbertson BH, Rattray J, Campbell MK, et
lies. rest. N Engl J Med 2010; 363:1256 –1264 al: The PRaCTICaL study of nurse led, inten-
15. Nolan JP, Neumar RW, Adrie C, et al: Post- sive care follow-up programmes for improv-
cardiac arrest syndrome: epidemiology, ing long term outcomes from critical illness:
ACKNOWLEDGMENTS pathophysiology, treatment, and prognosti- A pragmatic randomised controlled trial.
cation. A Scientific Statement from the In- BMJ 2009; 339:b3723
The authors acknowledge Society of
ternational Liaison Committee on Resuscita- 30. Jones C, Backman C, Capuzzo M, et al: In-
Critical Care Medicine staff members, Pa- tion; the American Heart Association tensive care diaries reduce new onset post
tricia Glover, RN, MS, and Virginia (Gin- Emergency Cardiovascular Care Committee; traumatic stress disorder following critical
ger) Johnston for their assistance with the Council on Cardiovascular Surgery and illness: A randomised, controlled trial. Crit
planning and executing the conference Anesthesia; the Council on Cardiopulmo- Care 2010; 14:R168
that led to this report. nary, Perioperative, and Critical Care; the 31. Knowles RE, Tarrier N: Evaluation of the
Council on Clinical Cardiology; the Council effect of prospective patient diaries on emo-
on Stroke. Resuscitation 2008; 79:350 –379 tional well-being in intensive care unit sur-
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