1 Quality of Life after A Critical Illness: A review of the literature 1998 2003 by Harriet Adamson BN MAdEd A Thesis submitted in fulfillment of the requirements for the degree Master of Nursing (Honours) The University of Sydney Faculty of Nursing Department of Clinical Nursing June 2004
2 This is to certify that this thesis has not been submitted for a higher degree to any other university of institution. The source of the information contained herein is original, and is solely the work of the author, except where indicated.. Harriet Adamson
3 Supervisor s Certificate This is to certify that the thesis, Quality of Life after A Critical Illness: A review of the literature1998 2003 submitted by Harriet Adamson in fulfillment for the degree Masters of Nursing (Honours) is ready for examination. Douglas J Elliott
iv Abstract Until recently, long-term effects of a critical illness (CI) have received little attention from intensive care staff, who have traditionally measured outcome from an intensive care unit (ICU) by morbidity and mortality. However, it is now acknowledged that CI is a continuum that begins before ICU and continues to impact on a patient s quality of life after they have been discharged home. Measuring health related quality of life (HRQOL) is a complex matter due to its multifaceted, subjective and dynamic nature. There has been a lack of consensus in the literature regarding the most appropriate methodological approaches and measuring instruments to use. This disparity has impeded comparison between studies. The aim of this thesis was to review the literature between January 1998 and December 2003 that focused on HRQOL for patients after a CI to identify and summarise themes and key outcomes. There were two main areas of focus - the methods used to measure the effects of the CI, and evaluation of the patient outcomes. An electronic search for relevant articles was conducted using the common clinical research databases and key words such as health related quality of life, outcomes and critical illness. Reference lists from these articles and conference proceedings were reviewed to identify further studies. There were 74 primary papers identified that reflected a number of subcategories including general ICU, Acute Respiratory Distress Syndrome (ARDS), and elderly patients. There were four categories of instruments used in the literature including those that measured acuity of illness, physical functioning, psychological functioning and HRQOL. The majority of studies used more than one measuring instrument, most of which had been previously validated. Results from the studies were diverse, but it is apparent that physical and psychological recovery from a CI may be a slow and varied process. Most studies were observational; only one randomised control study examined the benefits of a physical exercise program for patients post-hospital discharge. In general, there was no evidence of how to translate the study findings into some form of structured program to assist the patient with any identified problems. To enhance continuum of care, integration of ICU, hospital and rehabilitation services could target identified physical and psychological problems to assist patient recovery. However, strong evidence on the benefits of initiatives such as inpatient follow-up, outpatient clinics and use of ICU diaries is yet to be demonstrated.
v Acknowledgements I would like to thank Professor Doug Elliott for his careful reading and invaluable constructive comments during the compilation of this thesis.
vi TABLE OF CONTENTS Chapter Page ABSTRACT ACKNOWLEDGEMENTS TABLE OF CONTENTS LIST OF TABLES LIST OF FIGURES GLOSSARY OF RELATED TERMS ABBREVIATIONS USED IN TABLES ONLY 1 INTRODUCTION 1 1.1 BACKGROUND TO THE PROBLEM 1 1.2 RESEARCH OBJECTIVE 2 1.3 SEARCH STRATEGY 2 1.4 SEARCH RESULTS 3 1.5 STRUCTURE OF THESIS 3 1.6 TOPICS OUTSCOPED 3 2 EVALUATION OF STUDY METHODS 5 2.1 INTRODUCTION 5 2.2 HRQOL INSTRUMENT OVERVIEW 6 2.3 USE OF INSTRUMENTS THE ICU / CI SETTING 7 2.4 SPECIFIC INSTRUMENT DESCRIPTIONS 7 2.5 RECOMMENDATIONS FROM THE LITERATURE 24 3 SUMMARY OF OUTCOMES 27 3.1 GENERAL ICU PATIENTS 27 3.2 CONSEQUENCES OF LONG-TERM ICU TREATMENT 37 3.3 MEDICAL ICU PATIENTS 40 3.4 GENERAL SURGICAL ICU PATIENTS 43 3.5 ELDERLY ICU PATIENTS 47 3.6 ARDS /ALI PATIENTS 51 3.7 TRAUMA ICU PATIENTS 55 3.8 SEPSIS AND MODS PATIENTS 59 4 DISCUSSION 62 4.1 SYNTHESIS OF STUDY FINDINGS 62 4.2 LIMITATION OF THESIS 64 4.3 IMPLICATIONS FOR PRACTICE AND RESEARCH 65 iv v vi viii ix x xi
vii Chapter Page 4.4 RECOMMENDATIONS 65 4.5 CONCLUSIONS 66 5 REFERENCES 67 6 APPENDICES 78 6.1 ALL PAPERS INCLUDED IN THE REVIEW 78 6.2 EXCLUDED PAPERS 80
viii Table List of Tables Page 1 APACHE and SAPS Scores used in relevant studies 8 2 Other Measures of Acuity of Illness 10 3 Instruments used to Measure Physical Functioning 11 4 Studies using the Impact of Events Scale 12 5 Studies using Hospital Anxiety and Depression Scale 14 6 Other Instruments measuring Mental funcitoning 15 7 Studies using the SF-36 17 8 Studies Using the Sickness Impact Profile 18 9 Studies Using the Nottingham Health Profile 19 10 Studies Using the Euroqol-5D 20 11 Other instruments used to measure HRQOL 21 12 Studies Using Interviews and Questionnaires 23 13 General ICU Methods 28 14 General ICU Studies Instruments and findings 29 15 Patients Recollections of ICU 30 16 Post-ICU Experiences 31 17 Psychological Recovery Post Hospital 33 18 Physical Recovery Post Hospital 34 19 Studies Using Pre and Post ICU Measures 35 20 Studies Using Proxys to measure QOL pre ICU 36 21 Long-Term Studies 38 22 Methods for Medical Papers 40 23 Example of a multi cohort study 41 24 Methods for Surgical Patients 43 25 General Studies including Surgical Patients 44 26 Methods for Cardiac Surgical Papers 45 27 Studies using Long Term Cardiac Surgery Patients 46 28 Methods for Elderly Papers 48 29 Summary of Outcomes in the Elderly 49
ix 30 Methods for ARDS / ALI papers 52 31 Summary of ARDS / ALI studies 53 32 Methods for Trauma Studies 56 33 Studies of Trauma Patients 56 34 Trauma Literature comparing diagnostic groups 57 35 Methods for Sepsis / MODS Papers 59 36 Studies examining Sepsis patients 60 37 Studies examining patients with MODS 61 38 Summary of Methods for each study population 62 FIGURE 1 CONCEPTUAL FRAMEWORK FOR LITERATURE REVIEW 4
x GLOSSARY OF TERMS 6MWT ADL AIS ALI APACHE ARDS ASDI BDI BSI CES-D CI CIP COPD ED ETIC-7 EQ-5D FI GOS GOSS HADS HDU HRQOL IADL ICU ICU LOS IES ISS LOS MCEPS MODS MV NHP Six Minute Walk Test Activities of Daily Living Abbreviated Injury Score Acute Lung Injury Acute Physiology and Chronic Health Evaluation Acute Respiratory Distress Syndrome Acute Stress Disorder Index Beck Depression Inventory Brief Symptom Inventory Center for Epidemiologic Studies - Depression Critical Illness Critical Illness Polyneuropathy Chronic Obstructive Pulmonary Disease Emergency Department Experience after Treatment in Intensive Care Euroquol 5D Fear Index Global Outcome Score Geriatric Outcome Scoring System Hospital Anxiety and Depression Scale High Dependency Unit Health Related Quality of Life Instrumental Activities of Daily Living Intensive Care Unit Intensive Care Unit length of stay Impact of Events Scale Injury Severity Score Length of Stay Michigan Critical Events Scale Multi-Organ Dysfunction Syndrome Mechanical Ventilation Nottingham Health Profile
xi NYHA New York Heart Association Index OT Operating Theatre PTSD Post Traumatic Stress Disorder PTSS Post Traumatic Stress Symptoms QOL Quality of Life QOL IT Quality of Life Italian version QOL SP Quality of Life Spanish version QWB Quality of Well Being SAPS Simplified Acute Physiology Score SF-36 (Medical Outcomes Study) Short Form 36 SIP Sickness Impact Profile SOFA Sepsis related Organ Failure Assessment STAI State Trait Anxiety index SGRQ St George s Respiratory Questionnaire SSQNS Social Support Questionnaire Network Subscale TISS Therapeutic Intervention Scoring System TSC Trauma Symptom Checklist WAI Weinberger Adjustment Inventory Abbreviations used in tables only Aus Australia LT Long Term Mo Months Neuro Neurological N Number N/A Not available Pt Patient Resp Respiration S Surgery SS Scheduled Surgery UK United Kingdom USS Unscheduled Surgery USA United States of America