14 Original article
Factors associated with health-related quality of life among patients with liver cirrhosis in Egypt Naglaa F.A. Youssefa, Ashley Shepherdb and Josie M.M. Evansb a Medical-Surgical Nursing Department, Faculty of Nursing, Cairo University, Cairo, Egypt and bSchool of Health Sciences, University of Stirling, Stirling, Scotland, UK
Correspondence to Josie M.M. Evans, PhD, School of Health Sciences, University of Stirling, Stirling, FK9 4LA Scotland, UK Tel: + 44 1786 466352; e-mail: [email protected]
Received 9 October 2014 Accepted 28 January 2015 Journal of the Egyptian Public Health Association 2015, 90:14–19
Background Although the disease burden of liver cirrhosis in Egypt is high and there are few resources for its management, there is limited research on the health-related quality of life (HRQOL) of Egyptian patients with liver cirrhosis. Aims To describe the HRQOL of liver cirrhotic patients in Egypt and to analyse factors associated with this construct. Patients and methods A cross-sectional study with a convenience sample of 401 patients from three hospitals in Cairo, Egypt, was carried out in June–August 2011. Patients were interviewed to complete a background data form, Short Form-36, the Liver Disease Symptom Index-2.0 and the Multidimensional Scale of Perceived Social Support. Results Patients had low HRQOL, with mental health perceived to be poorer than physical health. In regression analyses, severity of symptoms, disease stage, comorbidities and employment status were associated significantly with physical health, accounting for 19% of the variance. For mental health, 31.7% of the variation was explained by severity of symptoms, employment status and perceived spouse and family support. Conclusion and recommendations These findings highlight the needs of patients with liver cirrhosis in Egypt. Engaging the patients’ family in care planning may decrease patients’ burden and improve their HRQOL. This study also provides a rationale to develop future research in symptom management to enhance HRQOL. Keywords: Egypt, health status, LDSI-2.0, liver cirrhosis, MSPSS, SF-36, social support, symptoms distress J Egypt Public Health Assoc 90:14–19 & 2015 Egyptian Public Health Association 0013-2446
Introduction Liver cirrhosis (LC) is a national health problem in Egypt, which has the highest worldwide prevalence of hepatitis C virus (HCV), the most common cause of cirrhosis [1,2]. The medical model has frequently dominated the assessment of health conditions and treatment outcomes, with medical interventions often assessed in terms of quantity rather than quality of survival, and with little attention paid to health-related quality of life (HRQOL) [3,4]. However, there are many disease-specific symptoms (such as pruritus, muscle cramps, sleep disturbance, sexual dysfunction, fatigue and gastrointestinal symptoms) that might affect the quality of life of patients with LC. Because LC in Egypt is a major public health issue, with 1.75 million individuals living with chronic liver disease, it is important to understand the HRQOL of these patients and to identify their unmet health needs to improve their biopsychosocial health [5]. However, very little research on HRQOL has been carried out among cirrhotic patients in Egypt [6,7]. Basal et al. [6] reported poorer quality of life in 0013-2446 & 2015 Egyptian Public Health Association
a small sample (n = 200) of Egyptian patients with chronic liver disease related to HCV at stages A and B (using the Child–Pugh score), but did not investigate patients at an advanced stage of cirrhosis. In contrast, a study by Schwarzinger et al. [7] investigated noncirrhotic chronic liver disease related to HCV in individuals unaware of their serological status and in a rural community in Egypt and showed that their quality of life was largely unaffected. The aim of our study was to describe the HRQOL of a more representative sample of patients with LC in Egypt and to analyse factors associated with HRQOL using a model of HRQOL outcomes [8].
Participants and methods A cross-sectional study was carried out over a period of 3 months at three hospitals in Cairo, Egypt. These hospitals were selected because they offer both local and regional inpatient and outpatient hepatic health services. A convenience sample of 415 patients was identified between June and August 2011. We included patients DOI: 10.1097/01.EPX.0000461923.98204.f5
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Quality of life in liver cirrhosis patients Youssef et al.
older than 18 years of age who had been diagnosed by a physician as having cirrhosis at least 1 year before the study, were not responding to antiviral therapy (i.e. interferon), and had stopped it at least 4 months before data collection. Patients who did not receive interferon therapy but required conservative medical management were eligible for the study. Patients with advanced hepatic encephalopathy of at least grade 2, neurological or communication problems, primary biliary cirrhosis, hepatic carcinoma, current treatment with antiviral medical treatment (interferon therapy) or postliver transplantation were excluded from the study. Patients who had cirrhosis but had not yet developed clinical decompensated complications (ascites, oesophageal variceal bleeding or encephalopathy) in the year of data collection were classified as having compensated cirrhosis. Patients who had developed any of the complications in the year of data collection were classified as having decompensated cirrhosis. Recruitment and methods
Patients were recruited from the outpatient clinics and inpatient wards. The physician or nurse helped to identify eligible patients. Face-to-face interviews were conducted with patients to complete a set of study questionnaires before and/or after the consultation. This data-collection process lasted between 20 and 40 min and was dependent on the patients’ health status and their interest in the study. Patients’ records were also used to collect information on medical history. Measurements
A background data sheet was used to collect sociodemographic characteristics and medical history: (i) sociodemographic data (i.e. age, sex, marital status, educational level, area of residence, current employment status, reasons for unemployment) were collected from the patients themselves as some of this information is not usually recorded in medical or nursing documents. (ii) Medical history (i.e. cause and stage of cirrhosis, complications of cirrhosis, number of hospital admissions related to liver disease, causes of hospital admissions and number and types of comorbidities) was collected from patients’ medical records. However, if the information was not available, the questions were addressed to the patients themselves. The symptoms experienced by the patients were assessed using the Arabic version of Liver Disease Symptom Index-2.0 (LDSI-2.0) [9]. This has satisfactory retest reliability (k value 0.62–0.94) and its Chronbach’s a coefficient for the multi-item scales ranges from 0.73 to 0.96 [9]. The LDSI-2.0 is divided into two subscales: one relates to severity of symptoms (15 items) and the other to how individuals’ daily and social activities are hampered by their symptoms (nine items). All items have ‘the last week’ as their time frame and are scored on a five-point Likert-type scale ranging from 0 ‘not at all’ to 4 ‘to a high extent’. The total and subscales scores were calculated by adding up the participant’s responses (0–60
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for the severity of symptoms, 0–36 for the hindrance of symptoms and 0–96 for the total). Higher scores indicate increasing symptoms severity and hindrance. The Multidimensional Scale of Perceived Social Support is a commonly used, simple instrument to measure adequacy of social support [10,11]. It has 12 items, with three subscales relating to adequacy of social support from three specific sources: family, friends and spouse. Each subscale has four items that are rated on a threepoint scale; the higher the score, the greater the perceived adequacy of social support. The Multidimensional Scale of Perceived Social Support is available in Arabic, and its validity and reliability have been established [12]. Possible scores for each subscale range from 12 to 36 (adjusted score 1–3). The Medical Outcome Short Form-36, version 2 (SF-36v2) is a generic HRQOL instrument that has been used widely to assess health status, and can be self-administered or completed with assistance in less than 10 min [13]. The SF-36 includes 36 items divided into the following eight domains that assess self-perceived health status: physical functioning, role physical, bodily pain, general health, vitality, social functioning, role emotional and mental health. Scores are obtained for each domain or can be aggregated into one of the following summary scores: a mental component summary score (MCS) and a physical component summary score (PCS), reflecting an individual’s mental and physical health. The scores were transformed according to SF-36 guidance and a mean score was calculated for each domain. A score below 50 indicates a poorer health status than the population average and a score above 50 indicates a better health status [14]. The validity and reliability of the Arabic version have been tested [15]. Permission to use the SF-36v2 in this study was granted by QualityMetric Incorporated and a licence was obtained (licence number: QM009535; Optum, Massachusetts, USA). Patients were also asked how they rated their general health compared with 1 year ago. Statistical analysis
The statistical package for the social sciences, 19 (IBM SPSS, Armonk, New York, USA) was used for data analysis. Descriptive statistics were computed to summarize data. The Pearson product–moment correlation coefficient (r) was used to assess the relationship between two parametric variables, and Spearman’s rank order correlation (r) was used for nonparametric variables. The independent t-test was used to compare differences between the mean scores of two groups. Otherwise, analysis of variance was used for multiple group comparisons. A nonparametric statistical technique, w2 for independence, was used to compare the frequencies of nominal variables. All statistical analyses were two tailed, with P less than 0.05 as the significance level. Stepwise multiple linear regression analysis was used to investigate factors associated with HRQOL with no previous decision on the order of entering the variables
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in the model. The independent variables were as follows: (a) severity of symptoms, (b) hindrance of symptoms, (c) perceived spouse support, (d) perceived family support, (e) perceived friends support, (f) disease stage, (g) number of comorbidities, (h) number of cirrhosis complications and (i) sociodemographic characteristics (age, sex, marital status, employment status, education and area of residence (dummy code). The multiple regression assumptions were investigated before presenting the regression results and there were no violations to these assumptions. Ethical approval
This study was carried out in accordance with ethical approval granted by the Department of Nursing and Midwifery Research Ethics Committee, University of Stirling and the Research Ethics Committee Board of the National Hepatology and Tropical Medicine Research Institute in Egypt.
Results Patients’ characteristics
Of 415 eligible patients, 413 were invited to take part (two were too anxious), and of these, 401 provided consent (response rate 96.6%). Over half of the patients were women (56.6%), and 77.3% were married, mean age 53.25 ± 9.0 years, ranging from 22 to 76 years. Only 17% of the patients in this study were currently employed, although the majority (90%) were younger than 65 years old. Of the 333 patients who were unemployed, 53.4% were housewives, whereas 39% had stopped working because of their inability to work as a result of liver disease (Table 1). Most patients (80.3%) were recruited from outpatient departments and were similarly distributed between compensated and decompensated stages of LC (50.1 and 49.0%, respectively). Nearly two-thirds (62%) of the patients reported suffering from at least one additional chronic disease (comorbidity) such as diabetes (27.7%) or hypertension (20.2%). LC complications such as splenomegaly (64.6%) were prevalent. A total of 153 (38.2%) patients had experienced hospital admission at least once as a result of liver disease. Ascities (23%) and bleeding (13.2%) were the most common causes of hospital admission (Table 2). HRQOL of patients with liver cirrhosis in Egypt
The mean scores of the eight domains of the SF-36 for the total sample ranged from 28.37 to 36.29, indicating that these patients had poor perceived health status. Role limitations because of physical health problems and mental health were the lowest rated domains, whereas vitality and physical functioning were the highest rated domains. The PCS and the MCS were much lower than the norm, with the MCS particularly low (Table 3). Over two-thirds (67.8%) of patients rated their general health as worse than 1 year ago (Table 3).
Table 1. Sociodemographic characteristics of 401 patients with liver cirrhosis recruited from three Cairo hospitals, 2011 Demographic data
N (%)
Age Mean ± SD 53.25 ± 9.0 Age categories 22–44 55 (13.7) 45–64 306 (76.3) 65 + 40 (10.0) Sex Males 174 (43.4) Females 227 (56.6) Marital status Married 310 (77.3) Single (never married, widowed, divorced) 91 (22.7) Education Cannot read and write 219 (54.6) Basic education 163 (40.0) Higher education (university) 19 (4.7) Residence Urban 255 (63.6) Rural 146 (36.4) Medication fees The patient 39 (9.7) Relatives or family 29 (7.2) Complete insurance 7 (1.7) Insurance and the patient 6 (1.5) Charity/Zakat 2 (0.5) Combined (treatment at state expense and the patient) 318 (79.3) House occupation Own 260 (64.8) Rent 141 (35.2) Type of work Employee (officers with stable salary) 56 (14.0) 136 (33.9) Worker (manual work without stable salary) 178 (44.4) Housewife (women do not work, farmer) 31 (7.7) Current employment status Employed 68 (17.0) Unemployed 333 (83.0) Cause of unemployment (n = 333 unemployed) Housewives 178 (53.4) Liver disease 130 (39.0) Other reasons (retirement, no job available) 25 (7.5)
Factors associated with HRQOL using bivariate analysis
The mean PCS score was significantly lower among women, illiterates, the unemployed, decompensated cirrhotic patients, inpatients and those with an increasing number of complications, comorbidities and hospital admissions, (Table 4). Similarly, the mean MCS score was lower among women, illiterates, the unemployed, decompensated cirrhotic patients and those with an increasing number of hospital admissions, (Table 4). Factors associated with HRQOL using multivariate analysis
To develop the regression model for each of the dependent factors (PCS and MCS), all the sociodemographic variables and medical data were entered into the regression analysis. We also entered scores for symptom experience (severity and hindrance) and social support from three sources. Model 1 (for PCS) significantly explained 19% of the variation in PCS. Four variables were associated significantly with PCS (symptoms severity, employment status, number of comorbidities and disease stage). Symptoms severity made the strongest contribution (28.7%) towards PCS, whereas disease stage made the lowest contribution (12.2%) (Table 5). Model
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Quality of life in liver cirrhosis patients Youssef et al. 17
Table 2. Medical data of 401 patients with liver cirrhosis recruited from three Cairo hospitals in 2011
Table 3. Means of SF-36 domains among 401 patients with liver cirrhosis recruited from three Cairo hospitals in 2011
Medical data
SF-36 domains
Setting of data collection Disease stage
Cause of cirrhosis
Complications of cirrhosisa
Number of hospital admissions related to liver disease
Variables
N (%)
Outpatient Inpatient Compensated cirrhosis Decompensated cirrhosis Hepatitis C virus (HCV) HCV and Bilharzias Bilharzias Cryptogenic (unknown cause) Hepatitis B virus (HBV) HCV and HBV Autoimmune Portal vein thrombosis Splenomegaly Ascities Oesophageal varices (OV) with bleeding OV without bleeding Portal hypertension Hepatic encephalopathy (grade 1) Never admitted
322 (80.3) 79 (19.7) 201 (50.1) 200 (49.9) 217 (54.1) 151 (37.7) 14 (3.5) 7 (1.7) 5 4 2 1 259 179 57
(1.2) (1.0) (0.5) (0.2) (64.6) (44.6) (14.2)
82 (20.4) 47 (11.7) 19 (4.7) 248 (61.8)
Admitted 1–5 times 69 (17.2) Admitted >5 times 84 (20.9) Conditions mentioned in any of Ascities and/or 91 (23) their hospital admissions oedema Gastrointestinal 53 (13.2) bleeding Hepatic coma 31 (7.7) Abdominal pain 29 (7.2) Jaundice 8 (2) Fever 7 (1.7) Spontaneous bacterial 6 (1.5) peritonitis Anaemia 4 (1) Comorbidities (n = 400) Without comorbidities 151 (37.8) Z1 comorbidities 249 (62.2) Types of comorbidities Diabetes mellitus 111 (27.7) Hypertension 81 (20.2) Gastrointestinal 53 (13.2) disease Musculoskeletal 52 (12.96) disease Renal disease 30 (7.5) Heart disease 24 (6) Asthma 18 (4.5) a
More than one complication may be present (multiple responses).
2 (for MCS) significantly explained 31.7% of the variation in MCS. Four variables were associated significantly with MCS (symptoms severity, perceived spouse support, employment status and perceived family support). Symptoms severity made the strongest contribution (43.6%) towards MCS, whereas perceived family support made the lowest contribution (9.7%) (Table 5).
Physical health Physical functioning Role limitations because of physical problems Bodily pain General health Mental health Vitality Social functioning Role limitations because of emotional problems Mental health Physical component summary score (PCS) Mental component summary score (MCS) Perceived general health compared with 1 year ago [n Much better now than 1 year ago Somewhat better now than 1 year ago About the same as 1 year ago Somewhat worse now than 1 year ago Much worse now than 1 year ago
Mean ± SD 35.20 ± 11.78 28.37 ± 11.28 34.94 ± 13.50 34.80 ± 11.02 36.29 ± 11.98 33.01 ± 14.76 31.11 ± 16.41 28.93 ± 15.73 35.56 ± 10.43 31.55 ± 14.42 (%)] 12 (3.0) 70 (17.5) 47 (11.7) 169 (42.1) 103 (25.7)
SF-36, Short Form-36.
Egypt [6] and western studies that reported physical health as worse than mental health [16–20]. This is a particularly noteworthy result as MCS scores lower than 35 may indicate the presence of depression [21]. A possible explanation for this difference may be that psychotherapy and supportive groups are often available to patients with liver disease in western healthcare, which is not always the case in developing countries such as Egypt. Further evidence of poorer outcomes in Egypt is indicated by 67.8% of the patients perceiving their health as worse than a year ago compared with only 45.7% in an Italian sample [16]. This may be because of fewer healthcare resources and poor quality of care. This again highlights the poor health of patients with LC in Egypt, particularly mental health, a worrying result, given its high prevalence. It is important to understand the factors associated with poor health. This study has shown the importance of sociodemographic variables, specifically education and employment, for perceived mental and physical health. Symptoms severity was also very important for mental and physical health, which is consistent with another liver disease study [22]. However, in terms of medical variables, comorbidities and disease stage were associated significantly with physical health, but not mental health. In fact, our study has clearly shown the importance of spouse and family support for the mental health and wellbeing of patients with liver disease in Egypt, findings that are consistent with studies in other chronic diseases. For example, social support among patients with cardiac disease was found to be associated specifically with mental health, but not with physical health (SF-12) [23]. Study strengths and limitations
Discussion The PCS and MCS were much lower than those found in another Egyptian study [6], which is perhaps not surprising, given that the sample in that study did not include patients at advanced stages of cirrhosis. Our study describes HRQOL in a more representative group of patients. The MCS was lower than the PCS, again in contrast to a previous study in
This study was cross-sectional, making it difficult to establish the direction of causality between associated variables. Therefore, longitudinal studies are required to investigate the causal directions of relationships between symptoms and social support and HRQOL in cirrhotic patients. A convenience sampling method was used for recruitment. However, the sample was representative of cirrhotic patients in Egypt in
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Table 4. Summary of factors associated with HRQOL (PCS and MCS) in 401 patients with liver cirrhosis recruited from three Cairo hospitals, 2011 HRQOL PCS Variables Sex Marital status Residential area Educational level Employment status Disease stage Cause of cirrhosis Hospital setting Complications Comorbidities Hospitalization
MCS
Classifications
N
Mean ± SD
t or f (P)
Mean ± SD
t or f (P)
Male Female Single Married Rural Urban Illiterate Basic education High education Employed Unemployed Compensated Decompensated Viruses Bilharzias and viruses Others Outpatient Inpatient Without complications 1–2 complications 3–4 complications Without comorbidities 1–3 comorbidities 4–6 comorbidities Never admitted Admitted 1–5 times Admitted >5 times
174 227 91 310 146 255 219 163 19 68 333 201 200 226 151 24 322 79 74 244 83 152 235 14 248 125 28
37.93 ± 10.96 33.75 ± 99.64 34.39 ± 9.80 35.91 ± 10.60 35.79 ± 10.7 35.43 ± 10.249 34.02 ± 9.95 37.35 ± 10.46 37.90 ± 13.07 41.53 ± 11.99 34.34 ± 9.66 37.37 ± 10.09 31.48 ± 14.72 35.59 ± 10.341 36.02 ± 10.715 32.34 ± 9.293 36.69 ± 10.38 30.95 ± 9.37 36.02 ± 8.90 36.41 ± 11.05 32.67 ± 9.36 38.30 ± 11.39 34.17 ± 9.46 29.16 ± 8.01 37.15 ± 10.53 33.46 ± 9.93 30.89 ± 8.78
4.05***
34.34 ± 15.20 29.40 ± 13.43 29.68 ± 12.38 32.09 ± 14.93 31.88 ± 14.30 31.36 ± 14.51 30.49 ± 14.08 31.98 ± 14.21 40.06 ± 17.49 46.22 ± 14.96 29.78 ± 13.66 31.61 ± 14.14 31.48 ± 14.72 30.85 ± 14.567 32.65 ± 14.022 31.21 ± 15.654 31.77 ± 14.36 30.64 ± 14.71 32.64 ± 14.20 31.87 ± 14.67 29.63 ± 13.84 33.72 ± 15.25 30.25 ± 13.86 29.73 ± 12.18 32.89 ± 14.25 29.84 ± 14.48 27.24 ± 14.40
3.44**
1.27 (0.22) 0.32 (0.7) 5.36*** 5.34*** 3.52*** 1.29 (0.274) 4.48*** 4.12* 10.41*** 8.49***
1.55 (0.16) 0.34 (0.72) 4.03* 5.64*** 0.08 (0.92) 0.71 (0.489) 0.62 (0.53) 1.00 (0.36) 2.80 (0.06) 3.23*
Association is significant at Po0.05 (two tailed). HRQOL, health-related quality of life; MCS, mental component summary score; PCS, physical component summary score. *Po0.05. **Pr0.001. ***Pr0.0001.
Table 5. Summary of factors associated with physical health (PCS) and mental health (MCS) domains in 401 patients with liver cirrhosis recruited from three Cairo hospitals, 2011 95% CI of b
Factors Model 1 (PCS) Constant Symptoms severity Employment status Number of comorbidities Disease stage Model 2 (MCS) Constant Symptoms severity Perceived spouse support Employment status Perceived family support
Unstandardized coefficient b d.f. = 4/306 46.554 – 0.228 – 4.215 – 1.241 2.548 d.f. = 4/306 40.911 – 0.478 2.573 – 4.447 1.873
Standardized coefficient b f = 17.987
t
– 0.436 0.135
R = 0.436 24.775 – 5.285 – 2.816 – 2.554 2.324 R = 0.563 9.944 – 8.585 2.705
– 0.116 0.097
– 2.330 2.008
– 0.287 – 0.152 – 0.134 0.122 f = 35.427
Significance 2
R = 0.190 0.0005 0.0005 0.005 0.011 0.021 R2 = 0.317 0.0005 0.0005 0.007 0.020 0.046
Lower
Upper
R2adj = 0.180
Significance = 0.0005 50.252 – 0.143 – 1.269 – 0.285 4.705 Significance = 0.0005 49.007 – 0.368 4.445
42.857 – 0.313 – 7.160 – 2.197 0.391 R2adj = 0.308 32.815 – 0.587 0.702 – 8.202 0.038
– 0.692 3.709
Dummy codes: sex: 0 males, 1 females, disease stage: 0 decompensated, 1 compensated, employment status: 0 employed, 1 unemployed, marital status: 0 single, 1 married, educational level: 0 educated, 1 uneducated, area of residence: 0 rural, 1 urban. MCS, mental component summary score; PCS, physical component summary score.
terms of sociodemographic characteristics and medical characteristics. There was an excellent response rate (96.6%), thus minimizing the chance of selection bias. Specific inclusion and exclusion criteria were used to select a representative sample of patients with LC, but without cancer or advanced hepatic encephalopathy, who may need a different approach to care. However, it is important to note that patients came from two different settings (outpatient and inpatient) and differences
that might have arisen because of the effect of the setting and quality of care were not evaluated.
Conclusion and recommendations This is the first study that has investigated HRQOL of liver cirrhotic patients in Egypt using a disease-specific
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Quality of life in liver cirrhosis patients Youssef et al.
tool (LDSI-2.0). Mental health was found to be particularly poor in these patients, although higher scores were observed among patients with more (spousal and familial) support. This suggests that engaging the patients’ family in the care plan may decrease patients’ burden and increase their HRQOL. Symptoms severity was also identified as being associated with perceived HRQOL in cirrhotic Egyptian patients. Therefore, this study provides a rationale to develop future research in symptom management to enhance HRQOL. Given that the regression models could only explain around 28.7 and 43.6% of the variation in physical and mental health respectively, there may be other associated factors that influence physical and mental health domains, which need further evaluation.
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Acknowledgements The authors would like to thank all the patients who kindly participated in this study. They would also like to thank the National Hepatology and Tropical Medicine Research Institute (NHTMRI), the Section of Tropical Medicine in Kaser El-ani Teaching Hospital and the Centre Doctor Yassein Abdel Ghaffar Charity for Diseases of the Liver and Research (CDYCDLR) in Cairo, and all the physicians and nurses for their kind support during the recruitment process. Special thanks are due to Maha Salah (Assistant Lecturer, Faculty of Nursing, Cairo University) for her cooperation during data collection and help with the recruitment process. This study was supported by a fund from the Egyptian government as a part of PhD research.
Conflicts of interest There are no conflicts of interest.
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Copyright © Journal of the Egyptian Public Health Association. Unauthorized reproduction of this article is prohibited.
Factors associated with health-related quality of life among patients with liver cirrhosis in Egypt Naglaa F.A. Youssefa, Ashley Shepherdb and Josie M.M. Evansb a Medical-Surgical Nursing Department, Faculty of Nursing, Cairo University, Cairo, Egypt and bSchool of Health Sciences, University of Stirling, Stirling, Scotland, UK
Correspondence to Josie M.M. Evans, PhD, School of Health Sciences, University of Stirling, Stirling, FK9 4LA Scotland, UK Tel: + 44 1786 466352; e-mail: [email protected]
Received 9 October 2014 Accepted 28 January 2015 Journal of the Egyptian Public Health Association 2015, 90:14–19
Background Although the disease burden of liver cirrhosis in Egypt is high and there are few resources for its management, there is limited research on the health-related quality of life (HRQOL) of Egyptian patients with liver cirrhosis. Aims To describe the HRQOL of liver cirrhotic patients in Egypt and to analyse factors associated with this construct. Patients and methods A cross-sectional study with a convenience sample of 401 patients from three hospitals in Cairo, Egypt, was carried out in June–August 2011. Patients were interviewed to complete a background data form, Short Form-36, the Liver Disease Symptom Index-2.0 and the Multidimensional Scale of Perceived Social Support. Results Patients had low HRQOL, with mental health perceived to be poorer than physical health. In regression analyses, severity of symptoms, disease stage, comorbidities and employment status were associated significantly with physical health, accounting for 19% of the variance. For mental health, 31.7% of the variation was explained by severity of symptoms, employment status and perceived spouse and family support. Conclusion and recommendations These findings highlight the needs of patients with liver cirrhosis in Egypt. Engaging the patients’ family in care planning may decrease patients’ burden and improve their HRQOL. This study also provides a rationale to develop future research in symptom management to enhance HRQOL. Keywords: Egypt, health status, LDSI-2.0, liver cirrhosis, MSPSS, SF-36, social support, symptoms distress J Egypt Public Health Assoc 90:14–19 & 2015 Egyptian Public Health Association 0013-2446
Introduction Liver cirrhosis (LC) is a national health problem in Egypt, which has the highest worldwide prevalence of hepatitis C virus (HCV), the most common cause of cirrhosis [1,2]. The medical model has frequently dominated the assessment of health conditions and treatment outcomes, with medical interventions often assessed in terms of quantity rather than quality of survival, and with little attention paid to health-related quality of life (HRQOL) [3,4]. However, there are many disease-specific symptoms (such as pruritus, muscle cramps, sleep disturbance, sexual dysfunction, fatigue and gastrointestinal symptoms) that might affect the quality of life of patients with LC. Because LC in Egypt is a major public health issue, with 1.75 million individuals living with chronic liver disease, it is important to understand the HRQOL of these patients and to identify their unmet health needs to improve their biopsychosocial health [5]. However, very little research on HRQOL has been carried out among cirrhotic patients in Egypt [6,7]. Basal et al. [6] reported poorer quality of life in 0013-2446 & 2015 Egyptian Public Health Association
a small sample (n = 200) of Egyptian patients with chronic liver disease related to HCV at stages A and B (using the Child–Pugh score), but did not investigate patients at an advanced stage of cirrhosis. In contrast, a study by Schwarzinger et al. [7] investigated noncirrhotic chronic liver disease related to HCV in individuals unaware of their serological status and in a rural community in Egypt and showed that their quality of life was largely unaffected. The aim of our study was to describe the HRQOL of a more representative sample of patients with LC in Egypt and to analyse factors associated with HRQOL using a model of HRQOL outcomes [8].
Participants and methods A cross-sectional study was carried out over a period of 3 months at three hospitals in Cairo, Egypt. These hospitals were selected because they offer both local and regional inpatient and outpatient hepatic health services. A convenience sample of 415 patients was identified between June and August 2011. We included patients DOI: 10.1097/01.EPX.0000461923.98204.f5
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Quality of life in liver cirrhosis patients Youssef et al.
older than 18 years of age who had been diagnosed by a physician as having cirrhosis at least 1 year before the study, were not responding to antiviral therapy (i.e. interferon), and had stopped it at least 4 months before data collection. Patients who did not receive interferon therapy but required conservative medical management were eligible for the study. Patients with advanced hepatic encephalopathy of at least grade 2, neurological or communication problems, primary biliary cirrhosis, hepatic carcinoma, current treatment with antiviral medical treatment (interferon therapy) or postliver transplantation were excluded from the study. Patients who had cirrhosis but had not yet developed clinical decompensated complications (ascites, oesophageal variceal bleeding or encephalopathy) in the year of data collection were classified as having compensated cirrhosis. Patients who had developed any of the complications in the year of data collection were classified as having decompensated cirrhosis. Recruitment and methods
Patients were recruited from the outpatient clinics and inpatient wards. The physician or nurse helped to identify eligible patients. Face-to-face interviews were conducted with patients to complete a set of study questionnaires before and/or after the consultation. This data-collection process lasted between 20 and 40 min and was dependent on the patients’ health status and their interest in the study. Patients’ records were also used to collect information on medical history. Measurements
A background data sheet was used to collect sociodemographic characteristics and medical history: (i) sociodemographic data (i.e. age, sex, marital status, educational level, area of residence, current employment status, reasons for unemployment) were collected from the patients themselves as some of this information is not usually recorded in medical or nursing documents. (ii) Medical history (i.e. cause and stage of cirrhosis, complications of cirrhosis, number of hospital admissions related to liver disease, causes of hospital admissions and number and types of comorbidities) was collected from patients’ medical records. However, if the information was not available, the questions were addressed to the patients themselves. The symptoms experienced by the patients were assessed using the Arabic version of Liver Disease Symptom Index-2.0 (LDSI-2.0) [9]. This has satisfactory retest reliability (k value 0.62–0.94) and its Chronbach’s a coefficient for the multi-item scales ranges from 0.73 to 0.96 [9]. The LDSI-2.0 is divided into two subscales: one relates to severity of symptoms (15 items) and the other to how individuals’ daily and social activities are hampered by their symptoms (nine items). All items have ‘the last week’ as their time frame and are scored on a five-point Likert-type scale ranging from 0 ‘not at all’ to 4 ‘to a high extent’. The total and subscales scores were calculated by adding up the participant’s responses (0–60
15
for the severity of symptoms, 0–36 for the hindrance of symptoms and 0–96 for the total). Higher scores indicate increasing symptoms severity and hindrance. The Multidimensional Scale of Perceived Social Support is a commonly used, simple instrument to measure adequacy of social support [10,11]. It has 12 items, with three subscales relating to adequacy of social support from three specific sources: family, friends and spouse. Each subscale has four items that are rated on a threepoint scale; the higher the score, the greater the perceived adequacy of social support. The Multidimensional Scale of Perceived Social Support is available in Arabic, and its validity and reliability have been established [12]. Possible scores for each subscale range from 12 to 36 (adjusted score 1–3). The Medical Outcome Short Form-36, version 2 (SF-36v2) is a generic HRQOL instrument that has been used widely to assess health status, and can be self-administered or completed with assistance in less than 10 min [13]. The SF-36 includes 36 items divided into the following eight domains that assess self-perceived health status: physical functioning, role physical, bodily pain, general health, vitality, social functioning, role emotional and mental health. Scores are obtained for each domain or can be aggregated into one of the following summary scores: a mental component summary score (MCS) and a physical component summary score (PCS), reflecting an individual’s mental and physical health. The scores were transformed according to SF-36 guidance and a mean score was calculated for each domain. A score below 50 indicates a poorer health status than the population average and a score above 50 indicates a better health status [14]. The validity and reliability of the Arabic version have been tested [15]. Permission to use the SF-36v2 in this study was granted by QualityMetric Incorporated and a licence was obtained (licence number: QM009535; Optum, Massachusetts, USA). Patients were also asked how they rated their general health compared with 1 year ago. Statistical analysis
The statistical package for the social sciences, 19 (IBM SPSS, Armonk, New York, USA) was used for data analysis. Descriptive statistics were computed to summarize data. The Pearson product–moment correlation coefficient (r) was used to assess the relationship between two parametric variables, and Spearman’s rank order correlation (r) was used for nonparametric variables. The independent t-test was used to compare differences between the mean scores of two groups. Otherwise, analysis of variance was used for multiple group comparisons. A nonparametric statistical technique, w2 for independence, was used to compare the frequencies of nominal variables. All statistical analyses were two tailed, with P less than 0.05 as the significance level. Stepwise multiple linear regression analysis was used to investigate factors associated with HRQOL with no previous decision on the order of entering the variables
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in the model. The independent variables were as follows: (a) severity of symptoms, (b) hindrance of symptoms, (c) perceived spouse support, (d) perceived family support, (e) perceived friends support, (f) disease stage, (g) number of comorbidities, (h) number of cirrhosis complications and (i) sociodemographic characteristics (age, sex, marital status, employment status, education and area of residence (dummy code). The multiple regression assumptions were investigated before presenting the regression results and there were no violations to these assumptions. Ethical approval
This study was carried out in accordance with ethical approval granted by the Department of Nursing and Midwifery Research Ethics Committee, University of Stirling and the Research Ethics Committee Board of the National Hepatology and Tropical Medicine Research Institute in Egypt.
Results Patients’ characteristics
Of 415 eligible patients, 413 were invited to take part (two were too anxious), and of these, 401 provided consent (response rate 96.6%). Over half of the patients were women (56.6%), and 77.3% were married, mean age 53.25 ± 9.0 years, ranging from 22 to 76 years. Only 17% of the patients in this study were currently employed, although the majority (90%) were younger than 65 years old. Of the 333 patients who were unemployed, 53.4% were housewives, whereas 39% had stopped working because of their inability to work as a result of liver disease (Table 1). Most patients (80.3%) were recruited from outpatient departments and were similarly distributed between compensated and decompensated stages of LC (50.1 and 49.0%, respectively). Nearly two-thirds (62%) of the patients reported suffering from at least one additional chronic disease (comorbidity) such as diabetes (27.7%) or hypertension (20.2%). LC complications such as splenomegaly (64.6%) were prevalent. A total of 153 (38.2%) patients had experienced hospital admission at least once as a result of liver disease. Ascities (23%) and bleeding (13.2%) were the most common causes of hospital admission (Table 2). HRQOL of patients with liver cirrhosis in Egypt
The mean scores of the eight domains of the SF-36 for the total sample ranged from 28.37 to 36.29, indicating that these patients had poor perceived health status. Role limitations because of physical health problems and mental health were the lowest rated domains, whereas vitality and physical functioning were the highest rated domains. The PCS and the MCS were much lower than the norm, with the MCS particularly low (Table 3). Over two-thirds (67.8%) of patients rated their general health as worse than 1 year ago (Table 3).
Table 1. Sociodemographic characteristics of 401 patients with liver cirrhosis recruited from three Cairo hospitals, 2011 Demographic data
N (%)
Age Mean ± SD 53.25 ± 9.0 Age categories 22–44 55 (13.7) 45–64 306 (76.3) 65 + 40 (10.0) Sex Males 174 (43.4) Females 227 (56.6) Marital status Married 310 (77.3) Single (never married, widowed, divorced) 91 (22.7) Education Cannot read and write 219 (54.6) Basic education 163 (40.0) Higher education (university) 19 (4.7) Residence Urban 255 (63.6) Rural 146 (36.4) Medication fees The patient 39 (9.7) Relatives or family 29 (7.2) Complete insurance 7 (1.7) Insurance and the patient 6 (1.5) Charity/Zakat 2 (0.5) Combined (treatment at state expense and the patient) 318 (79.3) House occupation Own 260 (64.8) Rent 141 (35.2) Type of work Employee (officers with stable salary) 56 (14.0) 136 (33.9) Worker (manual work without stable salary) 178 (44.4) Housewife (women do not work, farmer) 31 (7.7) Current employment status Employed 68 (17.0) Unemployed 333 (83.0) Cause of unemployment (n = 333 unemployed) Housewives 178 (53.4) Liver disease 130 (39.0) Other reasons (retirement, no job available) 25 (7.5)
Factors associated with HRQOL using bivariate analysis
The mean PCS score was significantly lower among women, illiterates, the unemployed, decompensated cirrhotic patients, inpatients and those with an increasing number of complications, comorbidities and hospital admissions, (Table 4). Similarly, the mean MCS score was lower among women, illiterates, the unemployed, decompensated cirrhotic patients and those with an increasing number of hospital admissions, (Table 4). Factors associated with HRQOL using multivariate analysis
To develop the regression model for each of the dependent factors (PCS and MCS), all the sociodemographic variables and medical data were entered into the regression analysis. We also entered scores for symptom experience (severity and hindrance) and social support from three sources. Model 1 (for PCS) significantly explained 19% of the variation in PCS. Four variables were associated significantly with PCS (symptoms severity, employment status, number of comorbidities and disease stage). Symptoms severity made the strongest contribution (28.7%) towards PCS, whereas disease stage made the lowest contribution (12.2%) (Table 5). Model
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Quality of life in liver cirrhosis patients Youssef et al. 17
Table 2. Medical data of 401 patients with liver cirrhosis recruited from three Cairo hospitals in 2011
Table 3. Means of SF-36 domains among 401 patients with liver cirrhosis recruited from three Cairo hospitals in 2011
Medical data
SF-36 domains
Setting of data collection Disease stage
Cause of cirrhosis
Complications of cirrhosisa
Number of hospital admissions related to liver disease
Variables
N (%)
Outpatient Inpatient Compensated cirrhosis Decompensated cirrhosis Hepatitis C virus (HCV) HCV and Bilharzias Bilharzias Cryptogenic (unknown cause) Hepatitis B virus (HBV) HCV and HBV Autoimmune Portal vein thrombosis Splenomegaly Ascities Oesophageal varices (OV) with bleeding OV without bleeding Portal hypertension Hepatic encephalopathy (grade 1) Never admitted
322 (80.3) 79 (19.7) 201 (50.1) 200 (49.9) 217 (54.1) 151 (37.7) 14 (3.5) 7 (1.7) 5 4 2 1 259 179 57
(1.2) (1.0) (0.5) (0.2) (64.6) (44.6) (14.2)
82 (20.4) 47 (11.7) 19 (4.7) 248 (61.8)
Admitted 1–5 times 69 (17.2) Admitted >5 times 84 (20.9) Conditions mentioned in any of Ascities and/or 91 (23) their hospital admissions oedema Gastrointestinal 53 (13.2) bleeding Hepatic coma 31 (7.7) Abdominal pain 29 (7.2) Jaundice 8 (2) Fever 7 (1.7) Spontaneous bacterial 6 (1.5) peritonitis Anaemia 4 (1) Comorbidities (n = 400) Without comorbidities 151 (37.8) Z1 comorbidities 249 (62.2) Types of comorbidities Diabetes mellitus 111 (27.7) Hypertension 81 (20.2) Gastrointestinal 53 (13.2) disease Musculoskeletal 52 (12.96) disease Renal disease 30 (7.5) Heart disease 24 (6) Asthma 18 (4.5) a
More than one complication may be present (multiple responses).
2 (for MCS) significantly explained 31.7% of the variation in MCS. Four variables were associated significantly with MCS (symptoms severity, perceived spouse support, employment status and perceived family support). Symptoms severity made the strongest contribution (43.6%) towards MCS, whereas perceived family support made the lowest contribution (9.7%) (Table 5).
Physical health Physical functioning Role limitations because of physical problems Bodily pain General health Mental health Vitality Social functioning Role limitations because of emotional problems Mental health Physical component summary score (PCS) Mental component summary score (MCS) Perceived general health compared with 1 year ago [n Much better now than 1 year ago Somewhat better now than 1 year ago About the same as 1 year ago Somewhat worse now than 1 year ago Much worse now than 1 year ago
Mean ± SD 35.20 ± 11.78 28.37 ± 11.28 34.94 ± 13.50 34.80 ± 11.02 36.29 ± 11.98 33.01 ± 14.76 31.11 ± 16.41 28.93 ± 15.73 35.56 ± 10.43 31.55 ± 14.42 (%)] 12 (3.0) 70 (17.5) 47 (11.7) 169 (42.1) 103 (25.7)
SF-36, Short Form-36.
Egypt [6] and western studies that reported physical health as worse than mental health [16–20]. This is a particularly noteworthy result as MCS scores lower than 35 may indicate the presence of depression [21]. A possible explanation for this difference may be that psychotherapy and supportive groups are often available to patients with liver disease in western healthcare, which is not always the case in developing countries such as Egypt. Further evidence of poorer outcomes in Egypt is indicated by 67.8% of the patients perceiving their health as worse than a year ago compared with only 45.7% in an Italian sample [16]. This may be because of fewer healthcare resources and poor quality of care. This again highlights the poor health of patients with LC in Egypt, particularly mental health, a worrying result, given its high prevalence. It is important to understand the factors associated with poor health. This study has shown the importance of sociodemographic variables, specifically education and employment, for perceived mental and physical health. Symptoms severity was also very important for mental and physical health, which is consistent with another liver disease study [22]. However, in terms of medical variables, comorbidities and disease stage were associated significantly with physical health, but not mental health. In fact, our study has clearly shown the importance of spouse and family support for the mental health and wellbeing of patients with liver disease in Egypt, findings that are consistent with studies in other chronic diseases. For example, social support among patients with cardiac disease was found to be associated specifically with mental health, but not with physical health (SF-12) [23]. Study strengths and limitations
Discussion The PCS and MCS were much lower than those found in another Egyptian study [6], which is perhaps not surprising, given that the sample in that study did not include patients at advanced stages of cirrhosis. Our study describes HRQOL in a more representative group of patients. The MCS was lower than the PCS, again in contrast to a previous study in
This study was cross-sectional, making it difficult to establish the direction of causality between associated variables. Therefore, longitudinal studies are required to investigate the causal directions of relationships between symptoms and social support and HRQOL in cirrhotic patients. A convenience sampling method was used for recruitment. However, the sample was representative of cirrhotic patients in Egypt in
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Table 4. Summary of factors associated with HRQOL (PCS and MCS) in 401 patients with liver cirrhosis recruited from three Cairo hospitals, 2011 HRQOL PCS Variables Sex Marital status Residential area Educational level Employment status Disease stage Cause of cirrhosis Hospital setting Complications Comorbidities Hospitalization
MCS
Classifications
N
Mean ± SD
t or f (P)
Mean ± SD
t or f (P)
Male Female Single Married Rural Urban Illiterate Basic education High education Employed Unemployed Compensated Decompensated Viruses Bilharzias and viruses Others Outpatient Inpatient Without complications 1–2 complications 3–4 complications Without comorbidities 1–3 comorbidities 4–6 comorbidities Never admitted Admitted 1–5 times Admitted >5 times
174 227 91 310 146 255 219 163 19 68 333 201 200 226 151 24 322 79 74 244 83 152 235 14 248 125 28
37.93 ± 10.96 33.75 ± 99.64 34.39 ± 9.80 35.91 ± 10.60 35.79 ± 10.7 35.43 ± 10.249 34.02 ± 9.95 37.35 ± 10.46 37.90 ± 13.07 41.53 ± 11.99 34.34 ± 9.66 37.37 ± 10.09 31.48 ± 14.72 35.59 ± 10.341 36.02 ± 10.715 32.34 ± 9.293 36.69 ± 10.38 30.95 ± 9.37 36.02 ± 8.90 36.41 ± 11.05 32.67 ± 9.36 38.30 ± 11.39 34.17 ± 9.46 29.16 ± 8.01 37.15 ± 10.53 33.46 ± 9.93 30.89 ± 8.78
4.05***
34.34 ± 15.20 29.40 ± 13.43 29.68 ± 12.38 32.09 ± 14.93 31.88 ± 14.30 31.36 ± 14.51 30.49 ± 14.08 31.98 ± 14.21 40.06 ± 17.49 46.22 ± 14.96 29.78 ± 13.66 31.61 ± 14.14 31.48 ± 14.72 30.85 ± 14.567 32.65 ± 14.022 31.21 ± 15.654 31.77 ± 14.36 30.64 ± 14.71 32.64 ± 14.20 31.87 ± 14.67 29.63 ± 13.84 33.72 ± 15.25 30.25 ± 13.86 29.73 ± 12.18 32.89 ± 14.25 29.84 ± 14.48 27.24 ± 14.40
3.44**
1.27 (0.22) 0.32 (0.7) 5.36*** 5.34*** 3.52*** 1.29 (0.274) 4.48*** 4.12* 10.41*** 8.49***
1.55 (0.16) 0.34 (0.72) 4.03* 5.64*** 0.08 (0.92) 0.71 (0.489) 0.62 (0.53) 1.00 (0.36) 2.80 (0.06) 3.23*
Association is significant at Po0.05 (two tailed). HRQOL, health-related quality of life; MCS, mental component summary score; PCS, physical component summary score. *Po0.05. **Pr0.001. ***Pr0.0001.
Table 5. Summary of factors associated with physical health (PCS) and mental health (MCS) domains in 401 patients with liver cirrhosis recruited from three Cairo hospitals, 2011 95% CI of b
Factors Model 1 (PCS) Constant Symptoms severity Employment status Number of comorbidities Disease stage Model 2 (MCS) Constant Symptoms severity Perceived spouse support Employment status Perceived family support
Unstandardized coefficient b d.f. = 4/306 46.554 – 0.228 – 4.215 – 1.241 2.548 d.f. = 4/306 40.911 – 0.478 2.573 – 4.447 1.873
Standardized coefficient b f = 17.987
t
– 0.436 0.135
R = 0.436 24.775 – 5.285 – 2.816 – 2.554 2.324 R = 0.563 9.944 – 8.585 2.705
– 0.116 0.097
– 2.330 2.008
– 0.287 – 0.152 – 0.134 0.122 f = 35.427
Significance 2
R = 0.190 0.0005 0.0005 0.005 0.011 0.021 R2 = 0.317 0.0005 0.0005 0.007 0.020 0.046
Lower
Upper
R2adj = 0.180
Significance = 0.0005 50.252 – 0.143 – 1.269 – 0.285 4.705 Significance = 0.0005 49.007 – 0.368 4.445
42.857 – 0.313 – 7.160 – 2.197 0.391 R2adj = 0.308 32.815 – 0.587 0.702 – 8.202 0.038
– 0.692 3.709
Dummy codes: sex: 0 males, 1 females, disease stage: 0 decompensated, 1 compensated, employment status: 0 employed, 1 unemployed, marital status: 0 single, 1 married, educational level: 0 educated, 1 uneducated, area of residence: 0 rural, 1 urban. MCS, mental component summary score; PCS, physical component summary score.
terms of sociodemographic characteristics and medical characteristics. There was an excellent response rate (96.6%), thus minimizing the chance of selection bias. Specific inclusion and exclusion criteria were used to select a representative sample of patients with LC, but without cancer or advanced hepatic encephalopathy, who may need a different approach to care. However, it is important to note that patients came from two different settings (outpatient and inpatient) and differences
that might have arisen because of the effect of the setting and quality of care were not evaluated.
Conclusion and recommendations This is the first study that has investigated HRQOL of liver cirrhotic patients in Egypt using a disease-specific
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Quality of life in liver cirrhosis patients Youssef et al.
tool (LDSI-2.0). Mental health was found to be particularly poor in these patients, although higher scores were observed among patients with more (spousal and familial) support. This suggests that engaging the patients’ family in the care plan may decrease patients’ burden and increase their HRQOL. Symptoms severity was also identified as being associated with perceived HRQOL in cirrhotic Egyptian patients. Therefore, this study provides a rationale to develop future research in symptom management to enhance HRQOL. Given that the regression models could only explain around 28.7 and 43.6% of the variation in physical and mental health respectively, there may be other associated factors that influence physical and mental health domains, which need further evaluation.
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Acknowledgements The authors would like to thank all the patients who kindly participated in this study. They would also like to thank the National Hepatology and Tropical Medicine Research Institute (NHTMRI), the Section of Tropical Medicine in Kaser El-ani Teaching Hospital and the Centre Doctor Yassein Abdel Ghaffar Charity for Diseases of the Liver and Research (CDYCDLR) in Cairo, and all the physicians and nurses for their kind support during the recruitment process. Special thanks are due to Maha Salah (Assistant Lecturer, Faculty of Nursing, Cairo University) for her cooperation during data collection and help with the recruitment process. This study was supported by a fund from the Egyptian government as a part of PhD research.
Conflicts of interest There are no conflicts of interest.
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