Psychological outcomes of cri2cal illness for pa2ents and family members Erin K. Kross, MD Summer Lung Day June 18, 2010
Outline Overview of psychological outcomes for pa2ents and family members ager cri2cal illness Current knowledge Ongoing local research Future direc2ons Theory of shared outcomes Importance for both pa2ents and their family members Clinical implica2ons
Psychological outcomes ager cri2cal illness Psychological symptoms are common ager cri2cal illness Surviving pa2ents Families of surviving pa2ents Families of pa2ents who die Long- term symptoms of PTSD, depression and anxiety, as well as decreased quality of life As survival from ALI/ARDS improves, long term outcomes are important to consider
Much of the decrement in quality of life is due to symptoms Components of decrements in HRQoL in 132 ARDS survivors Angus, AJRCCM 2001; 163:1389
Many of these symptoms are psychological and cogni2ve Symptom group 6 mo 12 mo Pulmonary (%) (%) Lower respiratory tract 43 40 Hoarse/dysphonia 20 5 Non- pulmonary Depression/anxiety 57 46 Cons2tu2onal 44 38 Cogni2ve 32 21 Angus, AJRCCM 2001; 163:1389
Pa2ents are at risk for psychological symptoms Survivors of cri2cal illness are at risk for: PTSD (5-63%) Risk factors: delusional memories, deeper seda2on, mechanical ven2la2on, length of stay, younger age, females, pre- ICU depression Protec2ve: Perceived social support Depression (10-47%) Risk factors: female, prior psych history, poor recall of ICU events Anxiety (23-48%) Deja M, Crit Care 2006;10(5):R147 Treggiari M, et al. Crit Care Med 2009;37(9):2527-34 Kross EK, et al, Crit Care Clinics 2008;24(4):875-87 Davydow D, et al, Gen Hosp Psychiatry 2009;31(5):428-35 Davydow D, et al, Int Care Med 2009;35(5):796-809
Family members are also at risk Family members of survivors of cri2cal illness are at risk PTSD (30-50%) Depression (20%) Anxiety (50%) Risk factors: female, child of ICU pa2ent, h/o cancer in pa2ent, feeling informa2on is incomplete, poor social support Azoulay E, AJRCCM 2005;12(1):65 Jones C, Int Care Med 2004;30:456 Kross EK et al, Crit Care Clinics 2008;24(4):875-87
Family members of those who die are at higher risk Family members of those who die in the ICU are also are risk French study showed higher PTSD/depression among family members of those who died Randomized 126 pa2ents if a`ending believed pa2ent would die in a few days Azoulay E, AJRCCM 2005;12(1):65 Lautrette A, NEJM 2007;356(6):469
Family member symptoms decreased with a communica2on based interven2on that included family conference p<0.02 for all Lautrette, NEJM, 2007; 356:469
Ongoing research survivors of ALI Recovery ager Lung Injury (RALI) cohort Prospec2ve cohort of ALI survivors at Harborview Medical Center Research Ques2ons: 1. What is the prevalence of PTSD and depression in this popula2on? 2. Are there associa2ons between ICU exposures and psychological symptoms? 3. Are there associa2ons between prior psychiatric history and medica2on use and psychological symptoms?
PTSD and depression in RALI cohort Predictor variables: Pa2ent demographics, ICU exposures History of psychiatric illness, psychiatric medica2ons, pain medica2ons and substance use (alcohol and illicit drugs) Outcome variables (surveyed at 6 months): PTSD symptoms Post- trauma2c symptom checklist (PCL) cutoff score > 45 Depression PHQ- 8 cutoff score > 10 and categorized (none, mild, moderate, moderately severe, severe)
RALI cohort Total n = 32 Male, n (%) 24 (75.0) Age, median (IQR) 48 (42, 57) Trauma, n (%) 22 (68.8) Days of mechanical ventilation, med (IQR) 13 (9, 23) Hospital length of stay in days, med (IQR) 26 (20, 33) Discharged to home, n (%) 11 (34.4)
Both PTSD and depression were common at 6 months
Most pa2ents had some symptoms of depression
Transfusion and length of stay were associated with PTSD and depression PTSD (n=8) No PTSD (n=23) p- value Depression (n=8) No depression (n=24) p- value Male, % (n) 75.0 (6) 78.3 (18) 0.85 75.0 (6) 75.0 (18) 1.00 Age, median (IQR) 50.5 (45.5, 47 (30,56) 0.34 50.5 (47,59) 47.5 (35.5,56) 0.31 58) Trauma, % (n) 87.5 (7) 60.9 (14) 0.17 87.5 (7) 62.5 (15) 0.19 Days of mechanical venolaoon, med (IQR) Hospital length of stay, days, med (IQR) Discharged home, % (n) 18.5 (9.5,33.5) 9 (13,22) 0.40 11.5 (9.5,29.5) 13.5 (9,23) 0.98 31.5 (27,59) 24 (18,32) 0.04 31.5 (24.5,56) 24.5 (17.5,31) 0.06 25.0 (2) 34.8 (8) 0.61 12.5 (1) 41.7 (10) 0.13 Steroids, % (n) 37.5 (3) 17.4 (4) 0.24 75.0 (2) 75.0 (6) 1.00 Transfused, % (n) 100.0 (8) 47.8 (11) <0.01 100.0 (8) 50.0 (12) 0.01
There were no associa2ons between psychiatric history or medica2on use and PTSD or depression PTSD (n=8) No PTSD (n=23) Depression (n=8) No depression (n=24) p- value p- value Psychiatric history, % (n) 50.0 (4) 47.8 (11) 0.92 50.0 (4) 45.8 (11) 0.84 Psychiatric meds, % (n) 25.0 (2) 21.7 (5) 0.85 25.0 (2) 20.8 (5) 0.81 Pain meds, % (n) 25.0 (2) 30.4 (7) 0.77 37.5 (3) 25.0 (6) 0.50 Substance use, % (n) 25.0 (2) 34.5 (8) 0.61 37.5 (3) 29.1 (7) 0.66
Conclusions from RALI PTSD and depression are common ager ALI Clinicians should be aware of the risk for symptoms among survivors Further work is needed to determine whether transfusion and length of stay are independently associated with PTSD and depression
Ongoing studies family members IPACC: of those who die in the ICU Clustered randomized trial of a program to integrate pallia2ve and cri2cal care in 14 hospitals in the Sea`le area SOFI: Follow- up study of par2cipants from IPACC at 11 hospitals Surveyed family members of those who died in the ICU for symptoms of PTSD and depression Minimum of 6 months ager death of loved one
Family members of those who die in the ICU Primary outcomes: PTSD symptoms (PCL) Depression symptoms (PHQ- 8) 226 family members Pa2ents tended to be older (mean 70 yrs), male (58%), white (92%) and married (60%) Prevalence of psychological symptoms: PTSD 14.0% (95% CI 9.7 to 19.3%) Depression 18.4% (13.5 to 24.1%) Gries CJ, et al. CHEST 2010;137(2): 280-7
Characteris2cs of pa2ents and family members Characteristic Family (n=226) Patient (n=226) Age in years, mean (sd) 59.7 (13.1) 70.5 (14.7) Female, % (n) 74.8 (169) 42.0 (95) White/non-hispanic, % (n)* 88.4 (199) 91.6 (207) Relationship to decedent Spouse/partner, % (n) Child, % (n) 48.7 (110) 36.7 (83) Years associated with decedent, median (IQR) 46 (34, 55) Marital status* Never married, % (n) Married, % (n) Divorced, % (n) Widowed, % (n) Education** No education through 8 th grade, % (n) Some high school, % (n) High school diploma or GED, % (n) Some college or trade school, % (n) 4-year college degree, % (n) Post-college training, % (n) 7.1 (16) 60.0 (135) 11.1 (25) 21.7 (49) 0.4 (1) 6.3 (14) 1.8 (4) 6.7 (15) 10.6 (24) 36.2 (81) 50.0 (113) 25.0 (56) 19.5 (44) 16.5 (37) 17.7 (40) 9.4 (21) Trauma as cause of death, % (n) 11.0 (25)
Decision- making process is important Risk factors that were iden2fied include: Female sex (PTSD, depression) Lower educa2on (depression) Shorter 2me known pa2ent (PTSD, depression) Discordance between family member s preferred decision- making role and their actual decision- making role (PTSD, depression) Gries CJ, et al. CHEST 2010;137(2): 280-7
More symptoms of depression when there was discordance in decision- making role 8 7 p < 0.05 Symptoms of depression (mean score on PHQ) 6 5 4 3 2 1 Primarily doctor's decision Family member involved in decision making Discordance Agreement 0 Preferred Role Actual Role Decision making role Gries CJ, et al. CHEST 2010;137(2): 280-7
More symptoms of PTSD when there was discordance in decision- making role Symptoms of PTSD (mean score on PCL) 45 40 35 30 25 20 15 10 5 0 p < 0.05 Primarily doctor's decision Family member involved in decision making Discordance Agreement Preferred Role Actual Role Decision making role Gries CJ, et al. CHEST 2010;137(2): 280-7
Age is the only pa2ent characteris2c associated with family PTSD Characteristic PTSD (PCL) Depression (PHQ-8) β (95% CI) p-value β (95% CI) p-value Age -0.20 (-0.37, -0.02) 0.026-0.05 (-0.13, 0.03) 0.210 Female -0.20 (-4.06, 4.45) 0.928 0.56 (-1.19, 2.31) 0.526 White race -0.05 (-6.89, 7.00) 0.988-0.29 (-3.17, 2.59) 0.844 Education Some high school High school College or more Marital status Single Married Divorced Widowed Cause of death Trauma Cancer Ref -0.91 (-5.87, 4.05) -0.65 (-5.86, 4.56) Ref -5.89 (-16.19, 4.40) -3.75 (-15.61, 8.10) -6.57 (-17.67, 4.53) -0.81 (-6.54, 4.92) 2.03 (-2.79, 6.85) 0.718 0.806 0.260 0.533 0.244 0.780 0.407 Ref -1.41 (-3.68, 0.87) -1.14 (-3.62, 1.33) Ref -1.70 (-6.01, 2.60) -2.47 (-6.88, 1.95) -3.55 (-7.91, 0.81) -1.10 (-3.66, 1.45) 1.18 (-0.70, 3.06) 0.224 0.362 0.436 0.272 0.110 0.396 0.218 Linear regression model includes all variables above plus family characteristics (gender, education, relationship to patient, years known patient)
Few pallia2ve care processes associated with PTSD and depression Palliative care indicator Family present at death (n=163) No family present at death (n=33) Family conference in 1 st 72 hours (n=161) No family conference in 1 st 72 hours (n=52) Ventilator withdrawal ordered (n=127) No ventilator withdrawal ordered (n=82) # (%) Families meeting PTSD criterion β (95% CI)* p-value 28 (17.2) 4.90 (0.73, 9.06) 0.021 1 (3.0) 26 (16.1) 4.06 (0.88, 7.23) 0.012 5 (9.6) # (%) Families meeting depression criteria 18 (14.2) -1.58 (-3.03, -0.13) 0.033 13 (15.9) Linear regression model adjusted for family characteristics (gender, education, relationship to patient, years known patient) No associations with social work, spiritual care or palliative care involvement, DNR orders, extubation or CPR.
Poten2al explana2ons for unexpected findings Higher symptoms of PTSD among family members present at death May be marker for quality of rela2onship May not be right decision for all family members Higher symptoms of PTSD among family members with early family conferences Unlikely to be due to conference itself May iden2fy challenging medical or family situa2ons for early conferences
Low family sa2sfac2on ra2ngs are associated with symptoms of PTSD and depression Lower family ra2ngs of sa2sfac2on with decision- making in the ICU is associated with higher symptoms of PTSD and depression (p<0.05) Family members who rated the quality of dying and death for the loved one lower had higher symptoms of PTSD (p=0.027) Linear regression model, adjusted for family characteris2cs (gender, rela2onship, years known, educa2on)
Families ra2ng sa2sfac2on with decision- making lower subsequently reported higher symptoms of PTSD and depression 100 FS-ICU Decision-making domain score, median (IQR) 90 80 70 60 50 40 PTSD (n=34) No PTSD (n=184) Depression (n=41) No depression (n=183)
Conclusions from IPACC/SOFI PTSD and depression are common Family risk factors: female, lower educa2on, shorter dura2on of rela2onship, discordance in decision- making role Few pa2ent level characteris2cs are associated with family symptoms Sugges2on that the pallia2ve care delivered influences long- term symptoms for family members Improving sa2sfac2on with decision- making and quality of dying and death may reduce symptom burden for family members
Future direc2ons - upcoming project Longitudinal cohort study of pa2ents who survive ALI and their family members Evaluate poten2ally modifiable ICU predictors of long- term psychological and quality of life outcomes for pa2ents Evaluate modifiable ICU predictors of long- term psychological and quality of life outcomes for family members Iden2fy associa2ons between long- term psychological outcomes of pa2ents and psychological outcomes of their family members Iden2fy poten2al interven2ons and support mechanisms that pa2ents and family members feel are important
Shared outcomes family systems theory Views family as an interdependent unit Extensive, complex emo2onal a`achments and interac2ons Families affect each other s thoughts, feelings and ac2ons Change in one member s func2oning leads to related changes in the func2oning of others in the family Kerr & Bowen, Family Evaluation: An Approach Based on Bowen Theory, 1988.
Shared experiences Family caregivers are instrumental in the care of chronically and cri2cally ill pa2ents Family systems theory applies Psychological morbidity and quality of life from either influences the other
The experience of cancer Pa2ents with cancer: When pa2ent has psychiatric diagnosis, caregivers 8 2mes more likely to meet criteria and vice versa Mutuality of psychiatric disorders between pa2ents and families may have important implica2ons for both groups Bambauer, Soc Psychiatry Psychiatr Epidemio 2006;127:1
Proposed mechanism for shared outcomes in the ICU PATIENT FACTORS Demographics Medical/psychiatric history Prior trauma Trauma of ICU Clinical variables PATIENT OUTCOMES Psychological Func2onal FAMILY FACTORS Demographics Medical/psychiatric history Rela2onship to pa2ent Decision- making preferences Trauma of ICU Support Communication Decision-Making FAMILY OUTCOMES Psychological Func2onal PRE- EVENT EVENT POST- EVENT
Clinical Implica2ons What we do in the ICU can make a difference Iden2fied modifiable risk factors Delusional memories Seda2on prac2ces Social support Informa2on sharing and counseling Family presence at death Decision making
Clinical Implica2ons Importance of care for family unit, including pa2ents and caregivers Delivering suppor2ve care to both pa2ent and caregivers Experience of cri2cal illness is not just for pa2ents Important to think of family, or caregiver group, as a unit Care for all may improve outcomes for all Improving outcomes for family members may have important implica2ons for outcomes for pa2ents
Acknowledgements J. Randall Cur2s, MD MPH Ruth Engelberg, PhD Terri Hough, MD MSc Cynthia Gries, MD MSc Doug Zatzick, MD Elizabeth Nielsen, MPH End of Life Care Research Program