HEALTH-RELATED QUALITY OF LIFE, SYMPTOMS EXPERIENCE AND PERCEIVED SOCIAL SUPPORT AMONG PATIENTS WITH LIVER CIRRHOSIS: A CROSS-SECTIONAL STUDY IN EGYPT Naglaa Fathy Afifi Youssef This thesis is presented for the degree of Doctor of Philosophy (PhD) SCHOOL OF NURSING, MIDWIFERY AND HEALTH APRIL 2013 0 DECLARATION I declare that this thesis is my own work except where otherwise stated. Naglaa Youssef April 2013 i ACKNOWLEDGEMENTS In the name of Allah (God) almighty, the most gracious, the most merciful, thanks for empowering and supporting me to successfully complete this PhD thesis. I want to express my deep gratitude to Doctor Josie Evans, Doctor Ashley Shepherd and Professor Sally Wyke, my research supervisors, for their enthusiastic encouragement, and useful critical and invaluable feedback that shaped my mind and may way of thinking. They willingness to give their time so generously has been very much appreciated. They helped me a lot during this challengeable journey and without their patience, inspiration, expertise and kindness support I could not have completed my thesis. I am very grateful to the external examiner: Professor Martyn Jones, University of Dundee; and the internal examiner: Doctor Carol Bugge, University of Stirling for their critical and interesting questions during the viva. I would like also to acknowledge the support provided by the Egyptian Government and its Cultural Bureau in London for funding my PhD study. My grateful thanks are extended to Professor Sharazad Ghazies, Professor Kairia El-Sawia, Doctor Naglaa Zayd, Ms. Nahla Hassan and Mr. Ali Alshraifeen for their help in assessing the content validity of the translated tool. My special thanks are extended to the staff of the settings where data were collected for their assistance with the collection of data. I would also like to thank Miss Maha Salah for her effort and time during data collection. Many thanks also pass to the patients who very kindly participated in this study for giving me their time and sharing with me their experience with liver disease. Without it I could not have completed this study. I wish to express my special appreciation to all my PhD colleagues and staff in School of Nursing, Midwifery and Health, University of Stirling for giving me their time to share knowledge and express my thoughts with them. I will never forget their continuous support and inspiration. Deep thanks also to the departmental office for their guidance and support to use the department resources effectively. All my love and special thanks go to my family for their encouragement and constant support. Deep warm thanks go to my lovely husband, Nehad, for his endless patience, sacrifice, and support throughout my study; without his support, I could not have completed this thesis. To my lovely son, Yassien who is in my heart all the time: thanks for your smile that supported me through my study. Great thanks for my parents, sisters and brothers for their Doaa and praying Allah to support me. Last, but sure not least, thanks a lot for Egyptian society in University of Stirling for supporting me more particularly during hard times and organised many social events that helped me not feel so homesick. ii BRIEF BACKGROUND ABOUT THE AUTHOR Naglaa Fathy Afifi Youssef graduated in the Faculty of Nursing, Cairo University, Egypt with Bachelor of Nursing Sciences. Following that, Youssef was awarded the Master of Nursing Sciences with an “Excellent” level degree in the same University. From 1999 to 2006 Youssef joined the Department of Medical-Surgical Nursing (Adult Nursing), Faculty of Nursing, Cairo University as a clinical instructor. In 2006, she was promoted to be assistant lecturer in the same University. In 2009, she got a competitive governmental scholarship from the Ministry of Higher Education to study her PhD. From September 2009 till 2013 conducted her PhD in the School of Nursing, Midwifery and Health, University of Stirling, Scotland, UK under the supervision of Doctor Josie Evans, Doctor Ashley Shepherd and Professor Sally Wyke. After finishing her PhD, Youssef will return to her Faculty in Cairo University as a lecturer. PUBLICATIONS, CONFERENCES PRESENTATIONS AND AWARD Publications YOUSSEF, N.F.A., SHEPHERD, A., EVANS, J.M.M. and WYKE, S., 2012. Translating and testing the Liver Disease Symptom Index 2.0 for administration to people with liver cirrhosis in Egypt. International Journal of Nursing Practice, 18(4), pp. 406-416. Conferences presentations Symptom experience and predictive factors in patients with liver cirrhosis: a cross sectional survey in Egypt (Oral Presentation), Role College of Nursing 2013 Annual International Nursing Research Conference 20-22 March 2013, Belfast, Northern Ireland, UK Translating and Testing the Liver Disease Symptom Index (LDSI)-2.0 for People with Liver Cirrhosis in Egypt (Conference talk), May 2012, SGRS Postgraduate Research Conference 12th, University of Stirling, Scotland, UK Translating and Testing the Liver Disease Symptom Index (LDSI)-2.0 for People with Liver Cirrhosis in Egypt, April 2012, The Scottish Federation of University Women, a Research Presentation Day for female postgraduate students, Glasgow, Scotland (presentation). Health-related quality of life and symptoms experience of patients with liver cirrhosis in Egypt, May 2011, Conference of “Rehabilitation and Participation in iii Long-Term Conditions: Building Bridges between Researchers, Practitioners and Service Users”, Hilton Hotel Dundee, Scotland, UK, (Poster). Health-related quality of life and symptoms experience of patients with liver cirrhosis in Egypt, (May 2011, "SGRS Postgraduate Research Conference 11th May”, University of Stirling, Scotland, UK, (Poster). Award A highly commended award from the Role College of Nursing: Research Society Marjorie Simpson New Researchers' award, http://www.rcn.org.uk/development/researchanddevelopment/rs/awards/marjorie iv LIST OF ABBREVIATIONS ALD: Alcoholic liver disease ASSIA: Applied Social Sciences Index and Abstracts BP: Bodily pain CASP: Critical Appraisal Skills Program CDYCDLR: Centre Doctor Yassin Abdel Ghaffar Charity for Diseases of the Liver and Research CINAHL: Cumulative Index to Nursing and Allied Health Literature CLDQ: Chronic Liver Disease Questionnaire, CRO: Clinical reported outcomes DLA: Dutch Liver Association DREC: Department of Nursing and Midwifery Research Ethics Committee NHTMRI: Research Ethics Committee Board of the National Hepatology and Tropical Medicine Research Institute e.g. Exempli gratia: Latin expression means for instance ECAQ: Executive Committee for Accreditation and Quality et al: et alia: Latin expression means and other etc.: et cetera: Latin expression means "and other things" or "and so on GH: General health HBV: Hepatitis B virus HCV: Hepatitis C virus HQOL-v2: Hepatitis Quality of Life Questionnaire Version 2, HRQOL: Health-Related Quality of Life HUI: Health Utilities Index HUI-II: Health Utilities Index-Mark II, HUI-III: Health Utilities Index-Mark III, i.e: id est: Latin expression means that is to say IQOLA : International Quality of Life Assessment LDQOL 1.0: Liver Disease Quality Of Life 1.0, LDSI-2.0: Liver Disease Symptom Index 2.0, LDSI-2.0: Liver Disease Symptom Index-2.0 MCS: Mental component summary score MELD: Model of End-Stage Liver Disease MFI-20: Multidimensional Fatigue Index-20 MFMER: Mayo Foundation for Medical Education and Research MH: Mental health MSPSS: Multidimensional Scale of Perceived Social Support NA: Not available NAFLD: Non-alcoholic fatty liver disease NBS: Norm-Based Score NHP: Nottingham Health Profile, NHS: National Health Service p. page PAT: Parenteral Antischistosomal Therapy PBC: Primary Biliary Cirrhosis PCS: Physical component summary score PF: Physical functioning PGWBI: Psychological General Well-Being Index, v PhD: Doctor of Philosophy PRO: patient reported outcomes QOL: Quality of Life QOLI: Quality Of Life Index, RE: Role limitations due to emotional problems RP: Role limitations due to physical health problems SF: Social functioning SF-12: Short Form 12, SF-36: Short Form-36 SIGN: Scottish Intercollegiate Guidelines Network UK: United Kingdom US: United States USA: United States of America VT: Vitality WHO: World Health Organisation WHOQOL-G: World Health Organisation Quality of Life-Group vi ABSTRACT Background: Liver cirrhosis is a global health problem and a national health problem in Egypt. There is a lack of literature on Health-Related Quality of Life (HRQOL) and symptoms experience of liver disease and cirrhotic patients in Middle East, particularly in Egypt. Aims: This PhD had three major aims: First aim: To describe HRQOL of Egyptian liver cirrhotic patients and to identify and evaluate the factors associated with (HRQOL) physical and mental health domains. Second aim: To explore and describe experienced symptoms (prevalence, severity and hindrance) in Egyptian cirrhotic patients and to identify and evaluate factors associated with symptoms severity and symptoms hindrance (distress). Third aim: To explore and describe how cirrhotic patients in Egypt perceive social support from spouse, family and friends and to identify and evaluate factors associated with general perceived social support. Method: A cross-sectional study with a convenience sample of 401 patients from three hospitals in Cairo, Egypt, was conducted between June and August 2011. Patients were interviewed to complete a background data sheet, Short Form-36v2 (SF-36), the Liver Disease Symptom Index (LDSI)-2.0 and the Multidimensional Scale of Perceived Social Support (MSPSS). Results: Findings for first aim: The findings showed that all domains and component summary scores [Physical component summary score (PCS) and mental component summary score (MCS)] of the generic SF-36 were below the norm (cut- off score 50), suggesting that patients with liver cirrhosis in Egypt have poor HRQOL. About 87.2% of the patients rated their general health as poor or fair, which means the majority of these patients have low perceived general health. Many socio-demographic and medial factors were shown to be significantly associated with perceived HRQOL. Women, illiterate and unemployed people, and patients with frequent hospitalisation had poor PCS and MCS, while patients with advanced disease stage, increasing number of comorbidities and complications and those admitted to inpatients had significantly poorer PCS only. Perceived social support from a spouse had a statistically significant positive association with PCS and MCS, while perceived social support from family and friends had a statistically significant positive association with MCS only. Also, severity and hindrance of symptoms significantly correlated with PCS and MCS. Using stepwise multiple linear regression analysis, two models were developed to identify factors associated with PCS (Model 1) and MCS (Model 2) health. Model 1 2 2 could significantly explain 19% of the variation in PCS (R = 0.190, R adj = 0.180, p = 0.0005), and four factors (symptoms severity, disease stage, comorbidities and employment status) were significantly (p ≤ 0.02) associated with PCS. Model 2 2 2 could significantly explain 31.7% of the variation in MCS (R = 0.317, R adj = 0.308, p = 0.0005), and four factors (symptoms severity, employment status, perceived spouse support and perceived family support) were associated (p ≤ 0.04) with MCS. The key findings of this study were that severity of symptoms and social support from spouse and family were associated with HRQOL. Where patients with high symptoms severity were likely to report poor PCS and MCS; and patients with vii low perceived social support were likely to report poor MCS. Symptoms severity contributed significantly in explaining 28.7% of the variation in PCS and 43.6% of the variation in MCS. Findings for second aim: This study found that the majority of patients had one or more of a wide range of symptoms and social problems. Two-thirds of patients reported joint pain (78.3%), decreased appetite (75.6%) and memory problems (77.3%). Joint pain and depression were reported to have the biggest impact on daily life. Symptoms severity and distress were significantly higher among patients who were: female, illiterate, unemployed, and who had advanced cirrhosis with more complications and comorbidities (p ≤ 0.006). Symptoms severity (r=-0.206) and symptoms distress (r=-0.205) were negatively associated with perceived social support (p=0.005). Stepwise regression analysis showed that the regression model 2 could significantly explain 19.6% of the variation in symptoms severity (R = 0.196, 2 2 R adj = 0.180, p = 0.0005), and 14% of the variation in hindrance of symptoms (R = 2 0.140, R adj = 0.132, p = 0.0005). Being female, having an increasing number of liver disease complications, and having low perceived support from spouse were significantly associated with high-perceived symptoms severity and hindrance (p≤0.01). Findings for third aim: This study found that social support score was relatively high among patients with cirrhosis in Egypt (total score mean of MSPSS was 2.02± standard deviation (0.537), while perceived support from spouse was the highest source of support. 67.5% of the patients felt their spouse is around when they need him/her and 71.7% of them share their joys and sorrows with their spouse. Likewise, 64.9% of married people feel their spouse cares about their feelings. In relation to the perception of adequacy of family support, it was observed that 52.6% felt that their families do not really try to help them. At the same time, 52.1% reported that they got the emotional help and support that they needed from their families. Regarding perceived support from friends, more than half of the patients reported that their friends do not really try to help them (57.9%), they cannot count on their friends when things go wrong (65.6%) and they cannot talk about their problems with their friends (56.4%). There was a significantly positive association between the perception of social support and general health perception (GHP), suggesting that when social support decreases GHP also decreases or and vice versa (r= 0.208, p = 0.0005). Stepwise regression analysis showed that the regression model could significantly explain 10.9% of the variation in perceived 2 2 social support (R = 0.109, R adj = 0.100, p = 0.0005). Marital status, gender, age and employment status were significantly associated with general perceived social support (p ≤ 0.01), while unmarried, females, unemployed and elderly cirrhotic patients were vulnerable groups that were likely to perceive low social support. Overall discussion and conclusion: This is the first study to investigate HRQOL, symptoms experience and perceived social support in patients with liver cirrhosis in Egypt. All aspects of HRQOL of Egyptian cirrhotic patients were poor, and they were experiencing various symptoms that can affect their daily life. However, social support was found to be related to perceived symptoms severity and perceived poor mental health. Hence, social support may alleviate suffering for certain cirrhotic patients. Nurses have a responsibility to assess and treat symptoms that cirrhotic patients experience, particularly such treatable symptoms as depression, pain and decreased appetite. Also, nurses should involve the patient’s family in any viii plan of care. Future intervention studies that aim to develop programs to relieve treatable symptoms and enhance social support are also recommended. ix