Prevalence of and Risk Factors for Anxiety, Depression, and Post-Traumatic Stress in Substitute ...

313 Pages·2016·5.85 MB·English

by  Orla Smith

Prevalence of and Risk Factors for
Anxiety, Depression, and Post-Traumatic Stress in
Substitute Decision-Makers of Patients in the Intensive Care Unit

by

Orla Marie Smith, RN, MN, CNCC(C)

A thesis submitted in conformity with the requirements
for the degree of Doctor of Philosophy

Lawrence S. Bloomberg Faculty of Nursing
University of Toronto
© Copyright by Orla Smith, 2016
Prevalence of and Risk Factors for
Anxiety, Depression, and Post-Traumatic Stress in
Substitute Decision-Makers of Patients in the Intensive Care Unit

Orla Marie Smith
Doctor of Philosophy
Lawrence S. Bloomberg, Faculty of Nursing
University of Toronto
2016

Abstract

Background: Most intensive care units (ICU) patients are incapable of participating in decision-
making. Substitute decision-makers (SDMs) generally assume decision-making responsibility yet
may vary in preferred level of involvement. Role incongruence refers to discordance between
preferred and actual role in decision-making. Role preferences and incongruence may be
associated with psychological symptoms (anxiety, depression, and post-traumatic stress) after
ICU.
Purpose: The primary objective was to explore prevalence and risk factors for symptoms of
psychological distress in SDMs after an ICU experience.
Methods: Cross-sectional, multi-centre, interviewer-administered survey of SDMs of critically
ill adults requiring mechanical ventilation (MV) for greater than 48 hours. Psychological distress
was defined as any symptoms of anxiety, depression, or post-traumatic stress using pre-defined
cut-points on the Hospital Anxiety and Depression Scale (HADS) and the Impact of Events Scale
(IES). The Control Preferences Scale (CPS) was used to evaluate decision-making role
preferences and incongruence.
Results: 180 SDMs were recruited; response rate was 64%. Active, shared, or passive roles were
preferred by 24% (n=43), 44% (n=79), and 31% (n=56) respectively. Almost half (n=85/174;
49%) reported incongruence. Using high thresholds, symptom prevalence was 50% (n=88/176),
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32% (n=57/177), and 16% (n=29/177), for post-traumatic stress, anxiety, and depression
respectively. The composite outcome of any psychological distress symptom was associated with
patient death [OR 2.95 (CI 1.08-8.02); p=0.03], female sex of the SDM [OR 2.96 (95% CI 1.49-
5.89); p = 0.002], and role incongruence [OR 3.26 (95% CI 1.67-6.36); p = 0.0005] when high
thresholds were considered. High threshold depressive symptoms were associated with spousal
relationships [OR 3.01; 95% CI 2.93-3.09; p=0.01] and high threshold post-traumatic stress
symptoms were associated with spousal relationships [OR 2.29 (95% CI 1.18-3.26); p=0.01],
female sex [OR 2.56 (95% CI 1.28-5.12); p=0.008], role incongruence [OR 2.57 (95% CI 1.33-
4.97); p=0.005], and patient death [OR 3.36 (95% CI 1.27-8.86); p=0.01].
Conclusions: High rates of adverse psychological symptoms in this study highlight the need to
identify and implement preventative and management strategies for SDMs. Strategies to prepare
proxies to engage in decision-making, to enhance shared decision-making, and to mitigate
psychological distress symptoms, should be considered before, during, and after the ICU
experience.
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Acknowledgments
I would like to recognize and thank the members of my thesis committee for their individual and
collective advice and support in the design and completion of this study: Dr. Kelly Metcalfe,
Lawrence S. Bloomberg Faculty of Nursing, University of Toronto (Supervisor); Dr. Jan
Friedrich, Critical Care Department and Keenan Research Centre, Li Ka Shing Knowledge
Institute, St. Michael’s Hospital and Faculty of Medicine, University of Toronto; Dr. Martine
Puts, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto; and Dr. Souraya
Sidani, Ryerson University. Through this challenging and rewarding process, their contributions
of time and intellect have been exceptionally valuable and appreciated.
Additionally, I want to thank Ella Ferris, Lianne Jeffs, John Marshall, and Deborah Cook for
providing research opportunities locally at St. Michael’s Hospital and nationally within the
Canadian Critical Care Trials Group over the past several years. Through the generosity of their
time and wisdom, I have been afforded tremendous opportunities to learn.
This study would not have been possible without the following individuals who assisted with
obtaining REB approvals, literature retrieval, data collection, and data entry across the study
sites: Snezhana Bessonova, Raphael Faraj, David Lightfoot, Arlene Lobrin, Ellen McDonald,
Kathy Matuszeswka, Kathleen Quinn, and Pragma Roy. Their contributions to this project were
immense. Drs. Rosane Nisenbaum and Shivon Sue-Chee are also to be thanked for their expert
statistical advice and support.
I am grateful for funding from the Canadian Institutes of Health Research, Sigma Theta Tau
International (Appendix A), the Lawrence S. Bloomberg Faculty of Nursing, and St. Michael’s
Hospital. This funding allowed the dedicated time necessary to focus on the development and
completion of this project.
I will always be grateful to the 180 individuals who shared their time and experiences with me
during a time of uncertainty and distress. I hope sharing their experience with others may lead to
improvements in decision-making processes for future SDMs of the critically ill.
Finally, to my husband Brian, my son Jack, my mom, dad, Aisling, Sinead, Caelainn, and Tadhg,
I thank you for your love and encouragement always. And for GF, another unicorn is born!

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Table of Contents
ACKNOWLEDGMENTS ....................................................................................................................................IV
LIST OF TABLES ............................................................................................................................................. VIII
LIST OF FIGURES ................................................................................................................................................ X
LIST OF APPENDICES ....................................................................................................................................... XI
LIST OF ABBREVIATIONS ............................................................................................................................ XII
CHAPTER 1 INTRODUCTION TO RESEARCH PROBLEM AND STUDY OVERVIEW ............. 1
1 OVERVIEW ...................................................................................................................................................... 1
1.1 CHALLENGES IN SUBSTITUTE DECISION-MAKING IN THE ICU .................................................................... 2
1.2 RATES AND RISK FOR ADVERSE PSYCHOLOGICAL OUTCOMES IN ICU SUBSTITUTE DECISION-
MAKERS ........................................................................................................................................................................ 3
1.3 THE RESEARCH PROBLEM ....................................................................................................................................... 5
1.4 STUDY PURPOSE ........................................................................................................................................................ 5
1.5 STUDY RELEVANCE .................................................................................................................................................. 5
CHAPTER 2 LITERATURE REVIEW ............................................................................................................ 7
2 OVERVIEW ...................................................................................................................................................... 7
2.1 SEARCH STRATEGY ................................................................................................................................................... 7
2.2 DECISION-MAKING IN THE ICU .......................................................................................................................... 10
2.3 DECISION-MAKING ROLE PREFERENCES AND ROLE CONGRUENCE IN THE ICU .................................. 11
2.4 ICU-ASSOCIATED ANXIETY ....................................................................................................................................... 15
2.4.1 Prevalence and risk factors for anxiety – Observational studies .................................................... 17
2.4.2 Interventions for ICU-associated anxiety .................................................................................................. 20
2.5 ICU-ASSOCIATED DEPRESSION ................................................................................................................................ 22
2.5.1 Prevalence and risk factors for depression- Observational studies............................................... 24
2.5.2 Interventions to decrease ICU-associated depression ......................................................................... 27
2.6 ICU-ASSOCIATED POST-TRAUMATIC STRESS ........................................................................................................ 27
2.6.1 Prevalence and risk factors for post-traumatic stress- Observational studies ........................ 29
2.6.2 Interventions to decrease ICU-associated post-traumatic stress ................................................... 31
2.7 ROLE PREFERENCES, CONGRUENCE, AND PSYCHOLOGICAL DISTRESS ............................................................... 32
2.8 SUMMARY OF EVIDENCE, LIMITATIONS, AND KNOWLEDGE GAPS ...................................................................... 34
2.9 CONCEPTUAL FRAMEWORK ................................................................................................................................. 36
2.9.1 A framework for research in health-care decision-making ................................................................. 36
2.9.2 The control preferences construct .................................................................................................................. 37
2.9.3 A framework for decision-making in the ICU ............................................................................................ 38
2.9.4 Decisional uncertainty and adverse psychological outcomes............................................................. 38
2.9.5 Conceptual framework for proposed study ................................................................................................. 39
CHAPTER 3 STUDY METHODS .................................................................................................................... 42
3 OVERVIEW .................................................................................................................................................... 42
3.1 STUDY PURPOSE ...................................................................................................................................................... 42
3.2 RESEARCH QUESTIONS .......................................................................................................................................... 42
3.3 PRIMARY HYPOTHESIS ........................................................................................................................................... 42
3.4 STUDY DESIGN ......................................................................................................................................................... 43
3.5 SETTING ..................................................................................................................................................................... 43
3.6 POPULATION AND SAMPLE ................................................................................................................................... 44
3.6.1 Inclusion criteria .................................................................................................................................................... 45
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3.6.2 Exclusion criteria................................................................................................................................................... 45
3.7 SCREENING AND RECRUITMENT ......................................................................................................................... 45
3.8 SAMPLE SIZE ............................................................................................................................................................. 46
3.9 DATA COLLECTION PROCEDURES ...................................................................................................................... 47
3.10 VARIABLES AND MEASUREMENT ....................................................................................................................... 49
3.10.1 Demographic data .............................................................................................................................................. 49
3.10.2 Decision-making role preferences and role incongruence ................................................................ 50
3.10.3 Satisfaction with ICU care and decision-making .................................................................................. 51
3.10.4 Anxiety and depression ..................................................................................................................................... 52
3.10.5 Post-traumatic stress ......................................................................................................................................... 53
3.11 DATA MANAGEMENT ............................................................................................................................................. 55
3.12 DATA ANALYSIS ...................................................................................................................................................... 56
3.12.1 Descriptive Data ................................................................................................................................................. 56
3.12.2 Question 1- Risk Factors for Symptoms of Psychological Distress .............................................. 56
3.12.3 Question 2- Variables Associated with Decision-Making Role Preference .............................. 58
3.12.4 Question 3- Variables Associated with Decision-Making Role Incongruence ........................ 58
3.12.5 Question 4- Variables Associated with ICU Satisfaction .................................................................. 58
3.12.6 Question 5- Decision-Making Preferences for Treatment and Research ................................. 59
3.13 ETHICS REVIEW .......................................................................................................................................................... 59
3.14 INFORMED CONSENT .............................................................................................................................................. 60
3.15 PRIVACY AND CONFIDENTIALITY ...................................................................................................................... 60
3.16 RISKS AND BENEFITS.............................................................................................................................................. 61
CHAPTER 4 RESULTS .......................................................................................................................................... 62
4 OVERVIEW ...................................................................................................................................................... 62
4.1 SAMPLE ........................................................................................................................................................................ 62
4.1.1 Screening and Recruitment .............................................................................................................................. 62
4.1.2 Enrolment Deviations ......................................................................................................................................... 63
4.1.3 Participant Characteristics .............................................................................................................................. 64
4.1.4 Patient Characteristics ....................................................................................................................................... 65
4.1.5 Documented Decision Making in the ICU................................................................................................... 66
4.2 DATA QUALITY ........................................................................................................................................................... 68
4.2.1 Data Distribution .................................................................................................................................................. 68
4.2.2 Missing Data............................................................................................................................................................ 68
4.2.3 Reliability of Outcome Measures ................................................................................................................... 69
4.3 SYMPTOMS AND PREDICTORS OF PSYCHOLOGICAL DISTRESS ........................................................................... 69
4.3.1 Prevalence and Severity of Symptoms of Psychological Distress ................................................... 69
4.3.2 Factors Associated with Symptoms of Psychological Distress ......................................................... 70
4.3.3 Sensitivity Analysis for Risk Factors for Symptoms of Psychological Distress ......................... 81
4.4 DECISION MAKING PREFERENCES AND EXPERIENCES ........................................................................................ 82
4.4.1 Decision Making Role Preferences ................................................................................................................ 82
4.4.2 Predictors of Decision Making Role Preferences .................................................................................... 83
4.4.3 Decision Making Role Preferences and Symptoms of Psychological Distress ........................... 85
4.4.4 Decision Making Role Congruence................................................................................................................ 86
4.4.5 Predictors of Decision Making Role Incongruence ................................................................................ 88
4.4.6 Satisfaction with Care and Decision Making ........................................................................................... 88
4.4.7 Variables Associated with Satisfaction with Care and Decision Making .................................... 92
4.4.8 Participant Commentary on Satisfaction with Care and Decision-Making............................... 95
4.5 TREATMENT VERSUS RESEARCH PREFERENCES .................................................................................................. 98
4.6 SUMMARY OF RESULTS ............................................................................................................................................. 99

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CHAPTER 5 DISCUSSION ................................................................................................................................. 101
5 OVERVIEW ................................................................................................................................................... 101
5.1 RESEARCH QUESTION #1: PREVALENCE OF AND RISK FACTORS FOR SYMPTOMS OF PSYCHOLOGICAL
DISTRESS .................................................................................................................................................................. 102
5.1.1 Prevalence of Symptoms of Psychological Distress ............................................................................. 102
5.1.2 Risk Factors for Symptoms of Psychological Distress ........................................................................ 106
5.1.3 Decision-Making and Psychological Distress ......................................................................................... 109
5.2 RESEARCH QUESTION #2: DECISION-MAKING ROLE PREFERENCES AND VARIABLES ASSOCIATED WITH
PREFERENCE ............................................................................................................................................................ 111
5.3 RESEARCH QUESTION #3: DECISION MAKING ROLE INCONGRUENCE AND VARIABLES ASSOCIATED WITH
INCONGRUENCE ....................................................................................................................................................... 114
5.4 RESEARCH QUESTION #4: SATISFACTION WITH ICU CARE AND DECISION-MAKING ................................ 115
5.5 RESEARCH QUESTION #5: DECISION-MAKING ROLE PREFERENCES FOR TREATMENT AND RESEARCH 118
5.6 STUDY STRENGTHS AND LIMITATIONS ............................................................................................................... 120
CHAPTER 6 CONCLUSIONS AND IMPLICATIONS FOR THEORY, PRACTICE, AND RESEARCH . 124
6 MAIN FINDINGS .......................................................................................................................................... 124
6.1 IMPLICATIONS FOR THEORY ................................................................................................................................. 124
6.2 IMPLICATIONS FOR PRACTICE .............................................................................................................................. 125
6.2.1 Pre-ICU Strategies .............................................................................................................................................. 126
6.2.2 ICU Strategies ....................................................................................................................................................... 127
6.2.3 Post-ICU Strategies ............................................................................................................................................ 133
6.3 IMPLICATIONS FOR RESEARCH ............................................................................................................................. 133

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List of Tables
Table Title Page Number

1 Survey framework 49
2 Demographic characteristics and levels of measure 50
3 Summary of research questions, variables, and measurement tools 55
4 Participant (SDM) Characteristics 65
5 Patient Characteristics 66
6 Documented Decision-making Events and Family Meetings 67
7 Internal Consistency of Outcome Measures 69
8 Prevalence and Severity of Symptoms of Anxiety, Depression, and
Post-Traumatic Stress 70
9 Risk Factors for Symptoms of Psychological Distress Using Low Screening
Thresholds 72
10 Risk Factors for Symptoms of Psychological Distress Using High Screening
Thresholds 73
11 Risk Factors for Symptoms of Anxiety Using Low Screening Threshold 74
12 Risk Factors for Symptoms of Anxiety Using High Screening Threshold 75
13 Risk Factors for Symptoms of Depression Using Low Screening Threshold 76
14 Risk Factors for Symptoms of Depression Using High Screening Threshold 77
15 Risk Factors for Symptoms of Post-Traumatic Stress Using Low Screening
Threshold 79
16 Risk Factors for Symptoms of Post-Traumatic Stress Using High Screening
Threshold 80
17 Comparison of Logistic and Linear Regression Models for Symptoms of
Psychological Distress 81
18 Decision-Making Preferences for Treatment 82
19 Patient and SDM Characteristics Associated with Preferred Role In
Treatment Decision-Making 84
20 Decision-Making Role Preferences and Prevalence of Symptoms of
Anxiety, Depression, and Post-Traumatic Stress 85
21 Patient and SDM Characteristics Associated with Decision-Making
Role Incongruence 88
22 Family Satisfaction In Intensive Care Unit [FS-ICU (24)] Scores 91
23 Variables Associated with Complete Satisfaction with ICU Care 93
24 Variables Associated with Overall Satisfaction in the ICU 94
25 Variables Associated with Decision-Making Satisfaction in the ICU 95
U1 Descriptive Data for Participants With and Without Psychological Distress at the
Low Screening Threshold 290
U2 Descriptive Data for Participants With and Without Psychological Distress at the
High Screening Threshold 291
U3 Descriptive Data for Participants Enrolled With and Without an Enrolment
Deviation 292
U4 Sensitivity Analysis for Predictors of Psychological Distress Using Low Screening
Thresholds and Excluding Participants with Eligibility Deviations 293
U5 Sensitivity Analysis for Predictors of Psychological Distress Using High Screening
Thresholds and Excluding Participants with Protocol Deviations 294
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U6 Patient and SDM Characteristics Associated with Preferring an Active Role in
Treatment Decision-Making for Female SDMs 295
U7 Patient and SDM Characteristics Associated with Preferring an Active Role in
Treatment Decision-Making for Male SDMs 296
U8 Patient and SDM Characteristics Associated with Preferring an Active Role in
Treatment Decision-Making for Spouses 297
U9 Patient and SDM Characteristics Associated with Preferring an Active Role in
Treatment Decision-Making for Non-Spouses 298
U10 Participant Comments About ICU Experience and Decision-Making 299

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List of Figures
Figure Title Page Number

1 Literature search results 9
2 Conceptual framework for study 41
3 Study flow 47
4 Control Preferences Scale 51
5 Flow diagram of screening and recruitment 64
6 Types of decisions documented in the medical chart 68
7 Decision-making role preferences and symptoms of anxiety, depression
and post-traumatic stress 86
8 Actual and preferred decision-making roles for ICU treatment decisions 87
9 Satisfaction with elements of care provided in the ICU 90
10 Decision-making role preferences for treatment and research 98

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