الفهرس 
Introduction
Chronic hepatitis COnly 14 pages are availabe for public view
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Abstract
Egypt has possibly the highest chronic hepatitis C prevalence in the world; 10%–20% of the general population is infected, with a seroprevalence in the Nile delta region reaching 30–40% in villagers over the age of 30 years. Given the number of HCV infected patients, the serious health problems commonly resulting from the disease such as; cirrhosis and its complications, and the significant economic burden on the patients, clinicians and researchers have become increasingly interested in understanding HCV’s impact on patients’ well-being. So, measurement of patient-based assessment of health-related quality of life (HRQoL) has become an important focus of research, as HRQoL measurement includes; the assessment of somatic symptoms, psychological status, social interactions, physical, cognitive, and psychosocial functioning and sense of well-being as influenced by the health status.
In the previous studies, it has been shown that CHC patients had a reduced HRQoL compared to the general population. So, the objectives of this study were to measure HRQoL in CHC patients attending specialized outpatient clinics in Assiut city, identify the factors associated with their HRQoL and to identify their counselling needs.
This was a descriptive cross-sectional study, and normal subjects were recruited in the study as controls, only to compare their HRQoL and depression scores with those of the study patients.
Study samples:
Four hundred individuals including 200 CHC patients, and 200 controls with negative (HCV-Abs) were included in this study. CHC patients were recruited from the outpatient clinics (Hepatic viruses clinic and the Gastroenterology clinic) of the Tropical Medicine and Gastroenterology department, Assiut University Hospital, while the controls were recruited from the blood donors at Assiut University Hospital blood bank, and healthy volunteers, who approved for giving a blood sample to undergo serologic examination, from the employees and laborers at Assiut University Hospital. Cases and controls were age and sex matched.
Data collection:
The study questionnaire was completed by direct interview with cases and controls, and included the following items:
1- Personal and sociodemographic data.
2- The validated translation from English into Arabic of medical outcomes study short form 36 health survey (SF-36).
3- The validated Arabic version of Zung self-rating depression scale.
4- A specific part for cases only, which included the following items:
a- CHC patients’ knowledge about HCV, family history of HCV infection, patients physical complaints, received medication, counselling, satisfaction about the provided health care, financial and working status affection by CHC illness and patients concerns.
b- The worry subscale of the chronic Liver Disease questionnaire.
c- Social impact scale by Fife and Wright.
d- The presence of current co-morbid medical illness.
Also, all patients laboratory data, ultrasonographic reports, medical records and prescriptions were reviewed. Moreover, all patients were counselled about CHC after filling the questionnaire and collecting all the relevant data.
Sociodemographic characteristics:
In this study, the mean age of the study participants was (40.43 ± 12.11), and of the controls was (40.04 ± 11.54), and the majority of patients were males (82.5 %).
There were insignificant differences between cases and controls regarding their marital status, however, there were significant differences between cases and controls in their occupation, education and residence, as the majority of cases were not working (41.5 %) compared to only (24 %) of the controls. Also, the illiteracy level was much higher among the study participants than among their controls, as (42 %) of cases were illiterate and (4%) just knew how to read and write, compared to (9%) and (14%) of the controls, respectively, and the majority of CHC cases (75.5 %) were rural residents, while (52.5%) of the controls were rural residents, and (47.5 %) of them were urban residents.
Assessment of HRQoL of the study population:
HRQoL was assessed using the SF-36 questionnaire, and revealed that the study CHC patients had significantly lower mean scores than those of their healthy controls in all eight subscales and the two summary scales with (p = 0.000) in all domains.
Factors affecting HRQoL of CHC patients:
Backward multiple regression analyses were performed to identify the independent variables that predicted on HRQoL, as measured by the summary scales (PCS and MCS) of the SF-36 Questionnaire, and it was found that depression (β =- 0.611, P = 0.000) and the presence of medical co-morbidities (β =- 0.218, P = 0.000) were the most strongly related factors to PCS, where higher depression scores and the presence of medical co-morbid illness resulted in lowering PCS score of HRQoL. Also, working status affection by CHC illness, age and using interferon therapy showed a weaker, but nevertheless statistically significant relationship with PCS of HRQoL of CHC patients. As for MCS, depression (β =- 0.651, P = 0.000) and illness-related stigma (β =- 0.222, P = 0.000) were the most strongly related predictors, while sexual dysfunction and working status affection were less strongly but significantly related factors.
Depression:
In this study, there was a statistically significant higher frequency of depression among cases, compared to their matched controls with (p= 0.000); (35 %) of cases had depression, as assessed by Zung self-rating depression scale, compared to (11.5 %) of the matched controls.
Moreover, depressed patients had statistically significant higher age (43.33 ± 11.5) compared to the not depressed. Also, there was a statistically significant higher frequency of depression among female patients (57.1%) compared to males (30.3%), and among patients of lower levels of education; (50%) and (62.5%) of the illiterate and those who knew only how to read and write, respectively, compared to (20%) and (22.2%) of those who have secondary and higher level of education, respectively. Regarding occupation, the highest frequency of depression was observed among the not working patients (51.8 %), which was also statistically significant.
However, there were no statistically significant differences in the frequency of depression by other variables, such as residence and marital status.
Medical co-morbidities:
In this study, almost one third (34.5 %) of CHC patients had co-morbid medical illness, and the highest frequencies of medical co-morbidities among CHC patients with co-morbid illnesses included; arthritis (29 %), hypertension (26.1 %), diabetes (24.6 %), skin diseases (23.2 %) and renal diseases (20.3 %). Other medical co-morbidities included neurological, cardiac and respiratory diseases, but with lower frequencies.
HCV-related stigma:
Social impact scale was used to measure CHC patients perception of stigma, and it was found that items of financial insecurity and internalized shame and some items of the social isolation were of high frequency among them, where (51%) of patients had financial hardship which affected their feeling towards themselves, and the job security was affected in (75.8 %) of patients who were working.
Also, (40.5%) of patients wanted to keep the secrecy of their illness, (49%) of patients had a sense of being unequal in relationships with other, (72.5%) felt less competent than before their illness, and (45 %) of CHC patients felt useless.
Also, there was a statistically significant higher total stigma score among the depressed (49.27 ± 12.23) compared to the not depressed CHC patients (35.84 ± 9.19). However, there were insignificant associations between the total stigma score and the sociodemographic variables.
Among the study patients, people perception of CHC as a contagious disease was the most important cause of keeping the secrecy of CHC illness (51.9 %). Other causes included; fears of being treated as less competent by others (37%), stigma of mode of transmission (17.3 %), people perception of CHC as fatal disease (14.8 %), fears of not getting married (14.8%) and husbands’ discrimination (3.7 %).
PEG-IFN and ribavirin therapy:
In this study sample, 92 patients have received PEG-IFN and ribavirin therapy, and 12 of them have discontinued this type of therapy more than a year ago. The majority of CHC patients who have received interferon therapy suffered from side effects (97.8 %), the most common of which were; flu-like symptoms, fatigue, loss of appetite, mood disturbances, myalgia and impaired concentration.
Also, CHC patients, who were taking interferon therapy, had significantly lower average scores on six of the eight scales of the SF-36 questionnaire, and also lower physical and mental summary scores, than CHC who weren’t taking this type of therapy. However, they had higher HRQoL scores than the cirrhotic group of patients.
Sexual dysfunction:
In this study, (35.1 %) of the study CHC male patients complained of sexual dysfunction. Moreover, CHC male patients who complained of sexual dysfunction had lower SF-36 scores for all domains, which was statistically significant, and higher depression and stigma scores than those who didn’t complain of sexual dysfunction, which were also statistically significant, however, there were insignificant associations between sexual dysfunction and all the liver disease parameters.
Financial and working status affection by CHC illness:
In this study, the financial conditions and the working status of the majority of HCV patients were affected by their illness; as (62 %) of them were financially affected and the working status of (82.2 %) of patients was also affected; as (43.3 %) of those whom work was affected, were prevented from travelling abroad because of their serology results, (42.5%) of them reported doing less work than before their illness, (41 %) stopped working completely, (22.4 %) reported increased absence from work and (5.2 %) changed the type of their work to simpler occupations which required less effort
CHC patients΄ satisfaction about the provided health care:
Regarding patients΄ satisfaction about the provided health care, (31 %) of CHC patients were very satisfied, (42.5 %) were satisfied to some extent, and only (7 %) were dissatisfied about it, and causes of dissatisfaction were; not providing them with enough information about the disease or the treatment (55.9 %), not having enough time for discussion with the physician (41.4 %), neglecting the discussion of their emotional conditions (35.4 %) and not giving them psychological support in the clinical visits (39.4 %).
CHC patients’ knowledge about Hepatitis C virus:
In this study, the most important source of patients’ information about CHC was the health care providers (77 %), followed by patients’ relatives or friends (26.7 %) and other HCV patients (26.1 %). Other sources of information were less frequent such as; television, brochures and posters.
Regarding the knowledge about the mode of transmission, most of the patients, who reported having information about CHC, had correct information about the mode of transmission, where they mentioned with high frequency blood transfusion (87%), sharing razors (80.7%), contaminated syringes (68.9%), sharing toothbrushes (65.2 %), contact of skin with infected blood (49.7%) and contaminated surgical tools (36.6%), as different modes of transmission. However, some patients mentioned, but with low frequencies, food or drink (16.8%), sexual relations (13%), towels (3.7%), mother to infant transmission (3.1%), hereditary (1.2%), shaking hands (0.6%) and insect bite (0.6%).
Counselling practice, by the health care providers:
In this study, (62 %) of CHC patients have received counselling about HCV from a health care provider. However, there was a very low frequency of counselling the patients’ families on HCV, which was only (3 %). The most frequent items included in patients counselling were; the mode of transmission of HCV (83.9 %), and how to prevent transmission to others (61.3 %). Also, maintaining a healthy balanced diet was a frequent item of patient counselling (83.9 %). However, only (21 %) of patients were counselled about the clinical course of HCV infection; late occurrence of complications, and only (8.1 %) about the importance and ways of maintaining a healthy life style, such as; abstinence from alcohol and smoking and practicing exercise.
Patients concerns regarding chronic hepatitis C infection:
When the study CHC patients were initially asked, in an open-ended manner about their concerns, the most common concern was disease progression (59.5 %) followed by death (29.5 %), social stigma (27 %), infecting family members (26 %), loss of employment (24 %), development of complications (22 %) and financial requirements (21 %),
However, when patients were asked to select a priority concern from a list of potential concerns, which were developed after the pilot study, disease progression was the most important concern for both male and female patients (26.1 %) and (57.1 %) respectively. For male patients, it was followed by development of complications (15.1 %), loss of employment (12.1 %), and death (10.9 %), while for female patients, it was followed by death (14.3 %), development of complications (8.6 %) and infecting family members (8.6 %).
So, the study recommends that
1- chronic hepatitis C patients should be routinely screened for depression, with treatment of the diagnosed cases.
2- Health care providers should be aware about the common co-morbidities that may affect CHC patients, in order to investigate for, diagnose and manage them, and about the potential of stigmatization, and try to ameliorate some of these perceptions in the patients through patients counseling at the time of diagnosis.
3- CHC male patients should be counselled regarding the possibility of a decline in sexual health, and receive adequate support and management if they complained about it.
4- Physicians and nurses should be trained to carry out appropriate counselling in the clinical visits, which discuss the patients’ real concerns and provide adequate information for patients to cope with their condition.