ORIGINAL RESEARCH Resilience in Survivors of Critical Illness in the Context of the Survivors’ Experience and Recovery Jason H. Maley1, Isabel Brewster2, Iris Mayoral2, Renata Siruckova2, Sarah Adams2, Kelley A. McGraw3, Angela A. Piech3, Michael Detsky4,5, and Mark E. Mikkelsen1,6,7 1
Department of Medicine; 6Pulmonary, Allergy, and Critical Care Division, Department of Medicine; and 7Center for Clinical Epidemiology and Biostatistics, Perelman School of Medicine at the University of Pennsylvania, 2School of Nursing, University of Pennsylvania, and 3Medical Intensive Care Unit, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania; and 4Interdivisional Department of Critical Care, University of Toronto, and 5Division of Respirology, Department of Medicine, Mount Sinai Hospital/University Health Network, Toronto, Ontario, Canada
Abstract Rationale: Post–intensive care syndrome (PICS), defined as new or worsening impairment in cognition, mental health, or physical function after critical illness, is an important development in survivors. Although studies to date have focused on the frequency of these impairments, fundamental questions remain unanswered regarding the survivor experience and the impact of the critical illness event on survivor resilience and recovery. Objectives: To examine the association between resilience and neuropsychological and physical function and to contextualize these findings within the survivors’ recovery experience. Methods: We conducted a mixed-methods pilot investigation of resilience among 43 survivors from two medical intensive care units (ICUs) within an academic health-care system. We interviewed survivors to identify barriers to and facilitators of recovery in the ICU, on the medical ward, and at home, using qualitative methods. We used a telephone battery of standardized tests to examine resilience, neuropsychological and physical function, and quality of life. We examined PICS in two ways. First, we identified how frequently survivors were impaired in one or more domains 6–12 months postdischarge. Second, we identified how frequently survivors reported that neuropsychological or physical function was worse.
Measurements and Main Results: Resilience was low in 28% of survivors, normal in 63% of survivors, and high in 9% of survivors. Resilience was inversely correlated with self-reported executive dysfunction, symptoms of anxiety, depression, and post–traumatic stress disorder, difficulty with self-care, and pain (P , 0.05). PICS was present in 36 survivors (83.7%; 95% confidence interval, 69.3–93.2%), whereas 23 survivors (53.5%; 95% confidence interval, 37.6–68.8%) reported worsening of neuropsychological or physical function after critical illness. We identified challenges along the recovery path of ICU survivors, finding that physical limitations and functional dependence were the most frequent challenges experienced in the ICU, medical ward, and on return to home. Spiritual and family support facilitated recovery. Conclusions: Resilience was inversely correlated with neuropsychological impairment, pain, and difficulty with self-care. PICS was present in most survivors of critical illness, and 54% reported neuropsychological or physical function to be worse, yet resilience was normal or high in most survivors. Survivors experienced many challenges during recovery, while spiritual and family support facilitated recovery. Keywords: critical care; survivorship; resilience; cognitive impairment; quality of life
(Received in original form November 25, 2015; accepted in final form March 5, 2016 ) Supported in part by the National Institutes of Health, National Heart, Lung, and Blood Institute (NIH NHLBI) Loan Repayment Program, Bethesda, Maryland (M.E.M.) and the National Institutes of Health, National Institute of Nursing Research (NIH NINR; R01 NR016014 01) (M.E.M.). Author Contributions: Conception and design: M.E.M., M.D., R.S., S.A., A.A.P. Data collection: J.H.M., M.E.M., R.S., K.A.M., I.B., I.M., S.A., A.A.P. Analysis and interpretation of the data: J.H.M., M.E.M. Drafting of the manuscript: J.H.M., M.E.M. Critical revision of the article for important intellectual content: J.H.M., M.E.M., R.S., K.A.M., I.B., I.M., S.A., A.A.P., M.D. Correspondence and requests for reprints should be addressed to Mark E. Mikkelsen, M.D., M.S.C.E., Pulmonary, Allergy, and Critical Care Division, Perelman School of Medicine, University of Pennsylvania, Gates 05.042, 3400 Spruce Street, Philadelphia, PA 19104. E-mail: [email protected] Ann Am Thorac Soc Vol 13, No 8, pp 1351–1360, Aug 2016 Copyright © 2016 by the American Thoracic Society DOI: 10.1513/AnnalsATS.201511-782OC Internet address: www.atsjournals.org
Maley, Brewster, Mayoral, et al.: Resilience in Survivors of Critical Illness
1351
ORIGINAL RESEARCH An estimated 5.7 million patients are admitted to intensive care units (ICU) each year (1). Because of advances in critical care, the majority of critically ill patients survive. Cognitive, psychiatric, and physical impairment appear to be common after critical illness (2–8), leading to the notion that survivorship will be the defining challenge of modern-day critical care (9). Post–intensive care syndrome (PICS), defined as new or worsening impairment in cognition, mental health, or physical function after critical illness (10), has been foreshadowed as a “hidden public health disaster” (11). Neuropsychological and physical impairment have been associated with medication nonadherence (12), an inability to return to work (13), decreased quality of life (3, 4, 14), and functional disability (2). If unrecognized, these impairments could undermine long-term health and health-related quality of life. To date, studies have focused on the frequency of impairments and reduced health-related quality of life among survivors (2–8). Although critically important, as our understanding of the burden of impairments matures and we begin to focus on restoring health and facilitating recovery, it is imperative that we better understand the experience of survivors and the impact of the critical illness event on survivors’ resilience and recovery. Resilience, a modifiable psychological trait, relates to one’s ability to adapt and adjust (15). Resilience, in the context of cancer survivorship, has been associated with health and psychosocial outcomes (16, 17). Among survivors of critical illness, survivors’ resilience, and the association between resilience and neuropsychological and physical function, has not been studied. Related, as the qualitative experience of survivors of critical illness have focused on severe sepsis and acute respiratory distress syndrome (18, 19), it is largely unknown what challenges survivors face during recovery and what factors facilitate recovery. This contextual knowledge is essential as we design health care to meet the needs of survivors by bolstering their resilience and mitigating the risk of PICS. In a mixed-methods study, we examined resilience and neuropsychological and physical function in survivors of critical illness. We hypothesized that resilience would be low among survivors of critical illness given the anticipated 1352
burden of neuropsychological and physical impairment. We hypothesized that impairments would frequently coexist, and that resilience would be associated with neuropsychological and physical function. To contextualize survivors’ resilience and long-term outcomes, and to improve care coordination and facilitate recovery, we conducted a qualitative study to understand the challenges experienced by survivors from ICU admission to home and the factors that facilitated recovery.
Methods Study Design and Population
We conducted a mixed-methods investigation to examine the long-term outcomes of survivors of critical illness and to understand the recovery experience. We contacted survivors from two medical intensive care units (MICUs) affiliated with the University of Pennsylvania Health System: the Hospital of the University of Pennsylvania (HUP, Philadelphia, PA) and Penn Presbyterian Medical Center (PMC, Philadelphia, PA). The HUP MICU is a 24-bed unit with approximately 1,600 annual admissions, and the PMC MICU is a 12-bed unit with approximately 950 annual admissions. Approximately 28% of patients admitted to the HUP MICU, and 18% of those admitted to the PMC MICU, die or transition to hospice during the hospitalization. Survivors were contacted by phone 6–12 months after a hospitalization that included a MICU admission between January and May, 2014. The target population included survivors with a MICU length of stay of at least 2 days
who were not discharged to hospice. Eligible subjects were identified using a previously validated administrative clinical database (20). The study was reviewed and approved by the institutional review board with the use of verbal informed consent (protocol #820066). Eligible subjects were contacted via telephone, using contact information provided during the index hospitalization. The battery and the survey were administered by trained investigators, each of whom had demonstrated competency after a mock interview with the lead investigator (M.E.M.). We contacted eligible subjects by phone on at least two occasions. If we were unable to contact the subject after multiple, separate attempts (21), we considered the patient lost to follow-up. At enrollment, each interviewer obtained verbal informed consent before administering the test battery and interview survey, using a standardized script. Data Collection
We assessed survivors’ neuropsychological and physical function, resilience, and health-related quality of life, using a telephone battery of standardized instruments (Table 1) (22–31). As a telephone-based assessment, we selected instruments that permitted us to identify self-reported impairments in neuropsychological and physical function. Although identifying impairment after critical illness is an important aim regardless of the temporal relationship to critical illness, to understand the impact of the critical illness event on survivors’ lives, we also sought to examine whether survivors viewed their function as worse (PICS-worse). Accordingly, after
Table 1. Long-term outcomes measured in survivors of medical critical illness Domain Cognition Anxiety Depression Post–traumatic stress disorder Resilience Mobility/social interaction Quality of life
Instrument
Range
Reference(s)
Health Utilities Index-3 (HUI-3) cognitive questions Hospital Anxiety and Depression Scale Hospital Anxiety and Depression Scale Post–Traumatic Stress Syndrome 10-Questions Inventory Connor–Davidson Resilience Scale (CD-RISC 10) Life-Space Questionnaire
See METHODS
22
0–21 0–21 7–70
23 23 24
0–40
25, 26
See METHODS
28, 29
EuroQol (EQ-5D-5L)
VAS 0–100
31
Definition of abbreviation: VAS = visual analog scale.
AnnalsATS Volume 13 Number 8 | August 2016
ORIGINAL RESEARCH completing the instruments, survivors were asked to describe their mental health and physical function as better, worse, or the same compared with before their ICU stay. In survivors who self-reported that they were “somewhat” forgetful or worse, or having at least “a little difficulty” with thinking and solving day-to-day problems in response to the cognitive questions from the Health Utilities Index-3 (HUI-3) (22), follow-up questions were asked to determine whether these difficulties were the same, better, or worse compared with before their ICU stay. Health-related quality of life was assessed with the EuroQol 5D-5L survey (31). The use of the HUI-3 was limited to assessing selfreported cognitive function. We designed and administered an original questionnaire to assess challenges faced by patients during care transitions from the ICU to home. We asked survivors to identify the three most significant challenges that they faced during each of the following periods: while in the ICU, transitioning to the medical ward, and transitioning to home. To understand factors that facilitated recovery, survivors were asked what helped in their recovery. To capture saliency (32), we ranked the frequency of the three elicited responses to understand survivors’ recovery experience. Open-ended responses were recorded on the case report form and were not audiotaped.
identify symptoms of clinically significant anxiety or depression (23, 33). A Post– Traumatic Stress Symptoms 10-Question Inventory (PTSS-10) score of 35 or greater defined impairment related to post– traumatic stress disorder (PTSD) (24). Cognitive impairment was defined as present if the survivor self-reported being “somewhat forgetful” or worse or having more than “a little difficulty” in his or her ability to think and solve day-to-day problems (22). Functional impairment, assessed using the mobility domain of the EuroQol 5D-5L survey (31), was defined as present in survivors reporting moderate problems or worse in walking (34). Second, as impairment may have predated critical illness and to further understand survivors’ resilience, we separately identified how frequently survivors reported that their cognition, mental health, or physical function was worse after critical illness (PICS-worse). The Life Space Questionnaire, with responses ranging from activity restricted to one’s home, porch, yard, neighborhood, town, or beyond within the past week, was
Data Analysis
We summarized categorical data using counts and percentages, and continuous variables using means and standard deviations or medians and interquartile ranges, depending on the observed distribution. We used a Student t test or Wilcoxon rank-sum test to compare continuous variables and the x2 test or Fisher exact test to compare categorical variables across groups. We used the Spearman correlation coefficient to examine the association between resilience and self-reported cognitive function (memory problems and executive dysfunction), anxiety, depression, PTSD, mobility, difficulties with self-care or usual activities, and pain.
Eligible N = 409
Contacted N = 159
Long-Term Outcomes
Resiliency was measured with the Connor–Davidson Resiliency 10-Item Scale, given its favorable psychometric properties among available resilience scales, and was categorized according to established population-based norms (25–27). High resiliency was defined as 1 standard deviation above the population mean (>38), normal as 27–37, and low resiliency as 1 standard deviation below the population mean (
Department of Medicine; 6Pulmonary, Allergy, and Critical Care Division, Department of Medicine; and 7Center for Clinical Epidemiology and Biostatistics, Perelman School of Medicine at the University of Pennsylvania, 2School of Nursing, University of Pennsylvania, and 3Medical Intensive Care Unit, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania; and 4Interdivisional Department of Critical Care, University of Toronto, and 5Division of Respirology, Department of Medicine, Mount Sinai Hospital/University Health Network, Toronto, Ontario, Canada
Abstract Rationale: Post–intensive care syndrome (PICS), defined as new or worsening impairment in cognition, mental health, or physical function after critical illness, is an important development in survivors. Although studies to date have focused on the frequency of these impairments, fundamental questions remain unanswered regarding the survivor experience and the impact of the critical illness event on survivor resilience and recovery. Objectives: To examine the association between resilience and neuropsychological and physical function and to contextualize these findings within the survivors’ recovery experience. Methods: We conducted a mixed-methods pilot investigation of resilience among 43 survivors from two medical intensive care units (ICUs) within an academic health-care system. We interviewed survivors to identify barriers to and facilitators of recovery in the ICU, on the medical ward, and at home, using qualitative methods. We used a telephone battery of standardized tests to examine resilience, neuropsychological and physical function, and quality of life. We examined PICS in two ways. First, we identified how frequently survivors were impaired in one or more domains 6–12 months postdischarge. Second, we identified how frequently survivors reported that neuropsychological or physical function was worse.
Measurements and Main Results: Resilience was low in 28% of survivors, normal in 63% of survivors, and high in 9% of survivors. Resilience was inversely correlated with self-reported executive dysfunction, symptoms of anxiety, depression, and post–traumatic stress disorder, difficulty with self-care, and pain (P , 0.05). PICS was present in 36 survivors (83.7%; 95% confidence interval, 69.3–93.2%), whereas 23 survivors (53.5%; 95% confidence interval, 37.6–68.8%) reported worsening of neuropsychological or physical function after critical illness. We identified challenges along the recovery path of ICU survivors, finding that physical limitations and functional dependence were the most frequent challenges experienced in the ICU, medical ward, and on return to home. Spiritual and family support facilitated recovery. Conclusions: Resilience was inversely correlated with neuropsychological impairment, pain, and difficulty with self-care. PICS was present in most survivors of critical illness, and 54% reported neuropsychological or physical function to be worse, yet resilience was normal or high in most survivors. Survivors experienced many challenges during recovery, while spiritual and family support facilitated recovery. Keywords: critical care; survivorship; resilience; cognitive impairment; quality of life
(Received in original form November 25, 2015; accepted in final form March 5, 2016 ) Supported in part by the National Institutes of Health, National Heart, Lung, and Blood Institute (NIH NHLBI) Loan Repayment Program, Bethesda, Maryland (M.E.M.) and the National Institutes of Health, National Institute of Nursing Research (NIH NINR; R01 NR016014 01) (M.E.M.). Author Contributions: Conception and design: M.E.M., M.D., R.S., S.A., A.A.P. Data collection: J.H.M., M.E.M., R.S., K.A.M., I.B., I.M., S.A., A.A.P. Analysis and interpretation of the data: J.H.M., M.E.M. Drafting of the manuscript: J.H.M., M.E.M. Critical revision of the article for important intellectual content: J.H.M., M.E.M., R.S., K.A.M., I.B., I.M., S.A., A.A.P., M.D. Correspondence and requests for reprints should be addressed to Mark E. Mikkelsen, M.D., M.S.C.E., Pulmonary, Allergy, and Critical Care Division, Perelman School of Medicine, University of Pennsylvania, Gates 05.042, 3400 Spruce Street, Philadelphia, PA 19104. E-mail: [email protected] Ann Am Thorac Soc Vol 13, No 8, pp 1351–1360, Aug 2016 Copyright © 2016 by the American Thoracic Society DOI: 10.1513/AnnalsATS.201511-782OC Internet address: www.atsjournals.org
Maley, Brewster, Mayoral, et al.: Resilience in Survivors of Critical Illness
1351
ORIGINAL RESEARCH An estimated 5.7 million patients are admitted to intensive care units (ICU) each year (1). Because of advances in critical care, the majority of critically ill patients survive. Cognitive, psychiatric, and physical impairment appear to be common after critical illness (2–8), leading to the notion that survivorship will be the defining challenge of modern-day critical care (9). Post–intensive care syndrome (PICS), defined as new or worsening impairment in cognition, mental health, or physical function after critical illness (10), has been foreshadowed as a “hidden public health disaster” (11). Neuropsychological and physical impairment have been associated with medication nonadherence (12), an inability to return to work (13), decreased quality of life (3, 4, 14), and functional disability (2). If unrecognized, these impairments could undermine long-term health and health-related quality of life. To date, studies have focused on the frequency of impairments and reduced health-related quality of life among survivors (2–8). Although critically important, as our understanding of the burden of impairments matures and we begin to focus on restoring health and facilitating recovery, it is imperative that we better understand the experience of survivors and the impact of the critical illness event on survivors’ resilience and recovery. Resilience, a modifiable psychological trait, relates to one’s ability to adapt and adjust (15). Resilience, in the context of cancer survivorship, has been associated with health and psychosocial outcomes (16, 17). Among survivors of critical illness, survivors’ resilience, and the association between resilience and neuropsychological and physical function, has not been studied. Related, as the qualitative experience of survivors of critical illness have focused on severe sepsis and acute respiratory distress syndrome (18, 19), it is largely unknown what challenges survivors face during recovery and what factors facilitate recovery. This contextual knowledge is essential as we design health care to meet the needs of survivors by bolstering their resilience and mitigating the risk of PICS. In a mixed-methods study, we examined resilience and neuropsychological and physical function in survivors of critical illness. We hypothesized that resilience would be low among survivors of critical illness given the anticipated 1352
burden of neuropsychological and physical impairment. We hypothesized that impairments would frequently coexist, and that resilience would be associated with neuropsychological and physical function. To contextualize survivors’ resilience and long-term outcomes, and to improve care coordination and facilitate recovery, we conducted a qualitative study to understand the challenges experienced by survivors from ICU admission to home and the factors that facilitated recovery.
Methods Study Design and Population
We conducted a mixed-methods investigation to examine the long-term outcomes of survivors of critical illness and to understand the recovery experience. We contacted survivors from two medical intensive care units (MICUs) affiliated with the University of Pennsylvania Health System: the Hospital of the University of Pennsylvania (HUP, Philadelphia, PA) and Penn Presbyterian Medical Center (PMC, Philadelphia, PA). The HUP MICU is a 24-bed unit with approximately 1,600 annual admissions, and the PMC MICU is a 12-bed unit with approximately 950 annual admissions. Approximately 28% of patients admitted to the HUP MICU, and 18% of those admitted to the PMC MICU, die or transition to hospice during the hospitalization. Survivors were contacted by phone 6–12 months after a hospitalization that included a MICU admission between January and May, 2014. The target population included survivors with a MICU length of stay of at least 2 days
who were not discharged to hospice. Eligible subjects were identified using a previously validated administrative clinical database (20). The study was reviewed and approved by the institutional review board with the use of verbal informed consent (protocol #820066). Eligible subjects were contacted via telephone, using contact information provided during the index hospitalization. The battery and the survey were administered by trained investigators, each of whom had demonstrated competency after a mock interview with the lead investigator (M.E.M.). We contacted eligible subjects by phone on at least two occasions. If we were unable to contact the subject after multiple, separate attempts (21), we considered the patient lost to follow-up. At enrollment, each interviewer obtained verbal informed consent before administering the test battery and interview survey, using a standardized script. Data Collection
We assessed survivors’ neuropsychological and physical function, resilience, and health-related quality of life, using a telephone battery of standardized instruments (Table 1) (22–31). As a telephone-based assessment, we selected instruments that permitted us to identify self-reported impairments in neuropsychological and physical function. Although identifying impairment after critical illness is an important aim regardless of the temporal relationship to critical illness, to understand the impact of the critical illness event on survivors’ lives, we also sought to examine whether survivors viewed their function as worse (PICS-worse). Accordingly, after
Table 1. Long-term outcomes measured in survivors of medical critical illness Domain Cognition Anxiety Depression Post–traumatic stress disorder Resilience Mobility/social interaction Quality of life
Instrument
Range
Reference(s)
Health Utilities Index-3 (HUI-3) cognitive questions Hospital Anxiety and Depression Scale Hospital Anxiety and Depression Scale Post–Traumatic Stress Syndrome 10-Questions Inventory Connor–Davidson Resilience Scale (CD-RISC 10) Life-Space Questionnaire
See METHODS
22
0–21 0–21 7–70
23 23 24
0–40
25, 26
See METHODS
28, 29
EuroQol (EQ-5D-5L)
VAS 0–100
31
Definition of abbreviation: VAS = visual analog scale.
AnnalsATS Volume 13 Number 8 | August 2016
ORIGINAL RESEARCH completing the instruments, survivors were asked to describe their mental health and physical function as better, worse, or the same compared with before their ICU stay. In survivors who self-reported that they were “somewhat” forgetful or worse, or having at least “a little difficulty” with thinking and solving day-to-day problems in response to the cognitive questions from the Health Utilities Index-3 (HUI-3) (22), follow-up questions were asked to determine whether these difficulties were the same, better, or worse compared with before their ICU stay. Health-related quality of life was assessed with the EuroQol 5D-5L survey (31). The use of the HUI-3 was limited to assessing selfreported cognitive function. We designed and administered an original questionnaire to assess challenges faced by patients during care transitions from the ICU to home. We asked survivors to identify the three most significant challenges that they faced during each of the following periods: while in the ICU, transitioning to the medical ward, and transitioning to home. To understand factors that facilitated recovery, survivors were asked what helped in their recovery. To capture saliency (32), we ranked the frequency of the three elicited responses to understand survivors’ recovery experience. Open-ended responses were recorded on the case report form and were not audiotaped.
identify symptoms of clinically significant anxiety or depression (23, 33). A Post– Traumatic Stress Symptoms 10-Question Inventory (PTSS-10) score of 35 or greater defined impairment related to post– traumatic stress disorder (PTSD) (24). Cognitive impairment was defined as present if the survivor self-reported being “somewhat forgetful” or worse or having more than “a little difficulty” in his or her ability to think and solve day-to-day problems (22). Functional impairment, assessed using the mobility domain of the EuroQol 5D-5L survey (31), was defined as present in survivors reporting moderate problems or worse in walking (34). Second, as impairment may have predated critical illness and to further understand survivors’ resilience, we separately identified how frequently survivors reported that their cognition, mental health, or physical function was worse after critical illness (PICS-worse). The Life Space Questionnaire, with responses ranging from activity restricted to one’s home, porch, yard, neighborhood, town, or beyond within the past week, was
Data Analysis
We summarized categorical data using counts and percentages, and continuous variables using means and standard deviations or medians and interquartile ranges, depending on the observed distribution. We used a Student t test or Wilcoxon rank-sum test to compare continuous variables and the x2 test or Fisher exact test to compare categorical variables across groups. We used the Spearman correlation coefficient to examine the association between resilience and self-reported cognitive function (memory problems and executive dysfunction), anxiety, depression, PTSD, mobility, difficulties with self-care or usual activities, and pain.
Eligible N = 409
Contacted N = 159
Long-Term Outcomes
Resiliency was measured with the Connor–Davidson Resiliency 10-Item Scale, given its favorable psychometric properties among available resilience scales, and was categorized according to established population-based norms (25–27). High resiliency was defined as 1 standard deviation above the population mean (>38), normal as 27–37, and low resiliency as 1 standard deviation below the population mean (
