Dr P. Fabris, Department of Infectious Diseases and Tropical Medicine, S. Bortolo Hospital, Viale Rodolfi 38, Vicenza, Italy. E-mail: firstname.lastname@example.org
Aims To assess how much patients with hepatitis C virus infection know about their condition and what impact it has on their lifestyle.
Materials and methods A multiple-choice questionnaire was administered anonymously to 364 hepatitis C virus-infected subjects just before their first specialist visit.
Results Even before hepatitis C virus infection was diagnosed, 257 subjects (70.6%) already knew something about this infection. Overall, 36% of patients had changed the way they behaved within the family, 25.5% had changed their sexual habits, 46.9% had changed their diet, and 69% reported having stopped or limited their alcohol intake after being told they were hepatitis C virus positive. Hepatitis C virus infection had a negative impact on the psychological status in 44.2% of patients. This effect was significantly greater among women and was independent of either the duration of their infection or any counselling received from the general practitioner. The need for specific treatment was reported by 59.8%. A demand for more detailed information about hepatitis C virus was expressed by 89.9% of patients.
Conclusions Hepatitis C virus changes all aspects of lifestyle and psychological status. The patients’ strong demand for more information suggests that counselling and educational programmes must be an integral part of the activities of both the general practitioner and the specialist.
It has been estimated that about 170 million people have hepatitis C virus (HCV) worldwide.1, 2 In Italy, the prevalence of HCV infection in the general population ranges from 2% in the north to 4% in the south, and increases with age, reaching 34% in people over 60.3, 4 Several studies have indicated that cirrhosis develops in 10–30% of people with chronic HCV over a period of 20–30 years.5–7 This means that most patients remain asymptomatic for a lengthy period of time and never develop progressive or symptomatic liver disease. The majority of infected people are consequently not given antiviral treatment and must live with the infection. In this light, knowing about HCV infection, the factors that can contribute to its transmission, and its natural history are important aspects for both doctors and affected patients. Apart from a few reports on quality of life and a few others on injected drug users, little information has been published on what HCV-infected patients really know about hepatitis C.8–11 How patients perceive their infection is likely to vary, influenced by age, educational and social levels, and cultural factors. Moreover, the understanding of different aspects of the disease may vary with time in the same patients. As the precise content of counselling schemes remains to be defined, some insight into these issues should provide a basis for identifying appropriate HCV patient counselling and management methods. Hence, the present study was aimed at assessing how much patients with hepatitis C infection know about their condition and what impact it has on their lifestyle.
Materials and methods
The study was conducted between 2002 and 2004 at three different hospitals in northern Italy (Department of Infectious Diseases and Tropical Medicine of Vicenza, Department of Gastroenterology, Padova University, and II Department of Internal Medicine, Savona), all located in industrialized regions with similar economic, social and cultural levels. As no standardized tool exists for assessing what a patient knows about HCV, we developed our own set of multiple-choice questions based on questionnaires already used and validated for other chronic diseases.12 Simple, unequivocal words were used. The questionnaire consisted of 17 queries. For some, patients were asked to briefly write their thoughts. Each item was designed by a research doctor with expertise in educational programmes, together with medical staff with experience of HCV management. The questionnaire was structured in different areas: demographic information, source of infection, impact on family behaviour, sex life, diet and alcohol consumption, and psychological status, and the need for treatment and for more detailed information about HCV. The demographic data consisted of age, gender, formal education, employment and marital status. Before starting the study, the questionnaire was piloted in 20 anti-HCV-positive patients. The difficulties were discussed with them, and some queries modified accordingly (see Appendix for questionnaire). The average time it took to complete was 10 min. The patients to interview were identified on the basis of the prescription presented at the information desk (i.e. first specialist visit for HCV positivity). To avoid any effects of counselling provided by other HCV specialists, we administered the questionnaire only to patients seen at our clinics for the first time. All questionnaires were completed in the waiting room before patients saw the specialist. They were administered anonymously after informing patients of the aim of the study and after informed consent was obtained. No medical staff attended the patient while the questionnaire was being completed, but were available to answer related queries if requested to do so. To get a homogeneous cohort, the questionnaire was not administered to patients with other severe health problems (i.e. drug abusers under the effects of drugs, patients with active mood and/or evident psychiatric disorders), patients with acute hepatitis, patients with chronic hepatitis B, or HCV/HIV or HCV/hepatitis B virus (HBV) co-infection. The study was approved by the local ethics committee.
Data analyses were performed using the chi-square test, chi-square for linear trend and Student's t-test as appropriate. P 0.05 was considered significant. Analyses were carried out using the Statistical Package for the Social Sciences (SPSS, Chicago, IL, USA).
The questionnaire was administered to 364 anti-HCV-positive, HCV-RNA-positive, consecutive patients (mean age 46 ± 15.9 years, range 17–80). The main demographic features of the population studied are shown in Table 1. Patients were referred to the specialist by general practitioners in 203 cases (55.8%), by other specialists in 89 (24.5%), by friends in 28 (7.7%), and by other services in 44 (12%). Of the patients studied, 210 [57.6%, men 131 (61.5%) women 79 (52.35), P = 0.1] had already received information about HCV infection from their own general practitioner (GP) before they met a specialist. This figure was inversely proportional to the subjects’ age [patients aged 40 years 102 (62.1%), patients aged >40 and 60 years 70 (64.8%) and patients over 60 years 38 (41.3%), P = 003] but not significantly related to the patient's level of education.
Table 1. Demographic characteristics of study population
Values are expressed as n (%).
46 ± 15.9 (range 17–80)
Level of knowledge and source of infection
Before they were diagnosed with HCV infection, 257 patients (70.6%) already knew something about the infection, and this knowledge was recorded with a frequency inversely proportional to the age of the patients [134/164 (81.7%) in patients 40 years old, 82/108 (75.9%) in patients >40 and 60, 41/92 (44.5%) patients over 60, P = 0.00001]. The amount of knowledge they possessed was directly proportional to their schooling, ranging from 66% (169/256) in patients with a primary and secondary school education to 81.4% (88/108) among patients with a diploma or university degree (P = 0.004). The sources of information by age group are shown in Table 2. The most common self-obtained information source was represented by friends (26.4%), followed by television programmes and magazines/newspapers (19.2% and 19.7% respectively). Remarkably, only 18 patients (4.9%) got their information about HCV infection exclusively from the Web. For 15 (4.1%) further subjects Internet was one of the multiple sources of information. A significant correlation was found between the use of Internet and the level of education [3/94 (3.1%) patients with primary school degree vs. 30/270 (11.1%) of those with higher school degree, P = 0.03]. Nearly half of the patients [48.9% (178/364)] said they knew the source of their infection, and the prevalence of this claim was inversely related to age [40 years old, 98/164 (59.7%); >40 and 60, 48/108 (44.4%); >60, 32/92 (34.7%), P = 0.00008]. The source of infection reported by patients in the questionnaires is shown in Figure 1.
Table 2. Sources of information of patients with HCV infection according to age group
Total (N = 364)
18–40 years (N = 164)
41–60 years (N = 108)
≥61 years (N = 92)
Values are expressed as n (%).
More than one source
The impact of HCV infection on family behaviour and sex life, diet and the psychological status is shown in Table 3a,b– divided according to how long patients had known they were infected. Overall, in terms of changes in family behaviour, no significant differences emerged between patients who said they had been counselled by their GP (36.1%, 76/210) and the patients who had not been counselled (34.4%, 52/151). However, among patients who reported to be counselled by their GPs, the modification on family behaviour increased significantly (P = 0.03) according to the length of anti-HCV positivity (Table 3b). Overall, most of the changes claimed by the patients (86%, 113/131) involved paying more attention to avoid transmitting the infection to relatives (e.g. not sharing toothbrushes, razors and scissors).
Table 3. (a) Overall impact of HCV infection on the lifestyle, diet regimes and on psychological status according to the knowledge of anti-HCV positivity and length of HCV positivity in 364 patients. (b) Impact of HCV infection on the lifestyle, diet regimes and on psychological status according to length of HCV positivity in 210 patients who had received counselling from a general practitioner
Knowledge of HCV positivity
In familiar behaviour modification
Changes in sexual activity
Negative impact on psychological status
Values are expressed as n (%). n.a., no answer. In familiar behaviour modification, changes of sexual activity, modification of dietary, and negative impact on psychological status: chi-square for linear trend: P = 0.03; P = 0.40, P = 0.05 and P = 0.64, respectively.
1 year (N = 161)
>1–5 years (N = 68)
>5 years (N = 135)
Total (N = 364)
1 year (N = 101)
>1–5 years (N = 40)
>5 years (N = 69)
Total (N = 210)
Ninety-three patients (25.5%) said they had changed their sexual habits after being told they were HCV positive, with a declining trend according to how long they had been found anti-HCV positive (Table 3a,b), irrespective of any counselling provided by the GP. The changes reported in the questionnaire were: use of condoms in 31 cases (33.3%), abstinence in 11 (11.8%), coitus interruptus in nine (9.6%), more limited sexual intercourse in four cases (4.3%), no answer in 38 (40%). The impact on sex life was inversely associated with age, and more frequently by men than by women [69 (50.3%) vs. 24 (21.6%), P = 0.002] (Table 4).
Table 4. Relationship between modification of sex behaviour among HCV patients according to age group and gender
18–40 years, N = 164 (M/F = 111/53)
41–60 years, N = 108 (M/F 63/45)
61 years, N = 92 M/F 39/53)
Values are expressed as n (%). n.a., no answer. Chi-square for linear trend according to age group: P = 0.009. Chi-square male vs. female: P = 0.002. Chi-square male vs. female by age group: 18–40 years, P = 0.17; 41–60 years, P = 0.03; ≥60 years P = 0.16.
Changes in diet and alcohol intake
One hundred and seventy-one patients (46.9%) had changed their eating habits after learning of their HCV infection, with no differences emerging between those who had or had not received counselling from their GP [109 (51.9%) vs. 71 (47.0%), P = 0.9]. Moreover, no significant differences were found between men and women [108 (50.7%) vs. 63 (41.7%), respectively, P = 0.1). These dietary changes appear to remain stable in the long term, as no significant differences were found comparing patients with different length of anti-HCV positivity (Table 3a,b).
Overall, 102 patients (28%) – 66 men and 36 women – drank alcohol regularly before being informed of their HCV positivity. Afterwards, 71 (69%) said they had stopped or limited their alcohol intake [48 men (72%) vs. 23 women (63.8%), P = 0.8]; 27 (38.0%) said they had not stopped their alcohol consumption, while four cases (3.9%) did not answer. The mean age of people who stopped or reduced their alcohol intake was significantly younger than people who did not (41.3 years vs. 48.1 years, P = 0.04) With time after the diagnosis of HCV positivity (<1 year, >1 to <5 years, >5 years), the number of patients who declared to have stopped drinking or restricted their alcohol intake was 30/46 (65.2%), 6/17 (35.2%) and 31/39 (79.4%) (P = 0.2). Similar figures were observed in the subgroup of 50 previously alcohol-drinking patients who were counselled by their general practitioner (data not shown).
Impact of HCV infection on psychological status
Overall, 161 patients (44.2%) reported a negative impact of HCV infection on their psychological status, an effect which seems to remain stable with time and is unaffected by any counselling received from the GP (Table 3a,b). Nor was any significant difference found in relation to the age of the patients: 70 (42.9%) in patients aged 40 years, 52 (48.5%) in patients >40 but <60 years and 39/92 (42.3%) in patients over 60 years old. Notably, this negative impact of HCV infection on the psychological status was apparently unaffected by the counselling provided by the GP, and significantly stronger in female than in male patients [76 (51.0%) vs. 85 (39.9%), P = 0.04, Table 5).
Table 5. Negative impact on psychological status of HCV infection according to age group and gender
18–40 years, N = 164 (M/F = 111/53)
41–60 years, N = 108 (M/F 63/45)
≥61 years, N = 92 (M/F 39/53)
Values are expressed as n (%). n.a., no answer. Chi-square for linear trend according to age group: P = 0.006. Chi-square male vs. female: P = 0.04. Chi-square male vs. female by age group: 18–40 years, P = 0.3; 41–60 years, P = 0.2; ≥60 years P = 0.1.
Need for treatment and further information on HCV
As regards treatment, 218 (59.8%) patients reported needing specific treatment, 107 (29.3%) needed no treatment, and 39 (10.7%) said they did not know. The perception of this need was not gender related [male 135/192 (70.3%) vs. female 83/133 (62.9%), P = 0.1). The mean age of patients who said they always needed treatment was not significantly different from that of patients who did not (48.4 years vs. 43.9 years, P = 0.1), but dividing by age bracket the need for treatment was: 103/164 (68.9%) in patients aged 40; 76/108 (70.3%) in those aged between 40 and 60; and 39/92 (42.3%) in those aged over 60. When subjects were divided according to how long they had been discovered anti-HCV positive, a perceived need for specific treatment was reported in 98/161 cases (60.8%) among patients who had been discovered to be infected for <1 year, in 43/68 (63.2%) among those infected for 1–5 years, and in 77/135 cases (57.0%) among those infected for more than 5 years.
Of the 364 patients questioned, 325 [89.2%; male 192 (90.1%), female 133 (88%)] said they wanted more detailed information about HCV, its transmission and natural history, i.e. 151/164 (92%) of the patients 40 years old, 96/108 (88%) of those aged >40 and 60 years, and 78/92 (84%) of the over 60-year olds. These figures were unaffected by the subjects’ level of formal education [primary school 94 (86%); secondary school 148 (91%); high school/diploma 85 (88.6%); university degree 10 (83%)].
This study collected information from HCV-positive patients, attending three different clinics in northern Italy for the first time to assess how much they knew about HCV infection and how it affected their lifestyles. The study was conducted anonymously using a self-administered questionnaire. Over 50% of the patients had already been given information by their GPs, but this proportion was significantly higher in younger than in older patients. This difference probably reflects the greater ease with which younger people retain information. Other possible explanations could lie in the fact that older people could have either a smaller social network or could be simple embarrassed to face this problem. Furthermore, quite often, HCV infection represents in older people a relatively less important problem than other concomitant conditions (e.g. cardiovascular diseases, diabetes), so the GP focuses on the more important health issue.
However, our data also show that HCV-infected patients collect information in several ways, especially when they are younger. The most important source of information is conversation with friends, often sharing the same experience. Though this source of information may have a favourable effect in containing anxiety related to HCV infection, it may also be responsible for spreading incorrect information. Older people tend to get information from the media, particularly television, which is the most direct source of information. Internet, which is potentially the most powerful source of information, is still in limited use by patients in Italy. Less than 5% of patients declared exclusive use of the Internet to get information about HCV infection. For another proportion of patients (4.1%) the Web represented one of the multiple sources of information. Clearly, this may depend on the age and socio-cultural level of individual patients. The patients who acquired information from the Web were younger and with a higher level of education. The importance of this source of information is growing worldwide, however, and in future it may well become the most important source.
About 50% of the patients interviewed said they knew how they had acquired the infection. This seems realistic, particularly in the case of intravenous drug users and transfused patients, but 19% and 24% of patients reported having acquired HCV infection from sexual intercourse and contact with infected objects, respectively. Although contact with infected objects may have to do with intravenous drug use, the reported percentage of sexual transmission is surprisingly high and, in accordance with epidemiological studies, probably overestimated.13, 14 A possible explanation for this lies in the patients’ conviction that HCV and HBV can be sexually transmitted with equal frequency. The routes of transmission declared by patients in our study differ greatly from those reported by the EurisKo survey in Italy, which was conducted by telephone interview and addressed to the general population.15 In fact, the EurisKo survey recorded an incredibly large number of possible modes of HCV infection. The difference may be related to the structure of the questionnaire, but can also be explained by the fact that infected people know more about how the infection is transmitted than the general population, thus confirming that a proportion of HCV-infected people are well conscious of how they acquired the infection. On the other hand, about 50% had no idea how they had become infected: these people were generally older and had a long history of infection, possibly related to a community transmission of HCV.
Several studies on patients with chronic hepatitis C have measured the quality of life in HCV-infected people using standard tools such as the health-related quality of life with specific scales for measuring several indicators (physical function, general health, vitality, etc.).8 Compared with healthy controls, these studies have reported a worse quality of life in these patients. Our study evaluated the impact of HCV on lifestyle, directly considering the impact of HCV infection on specific aspects of normal life, i.e. family relations, sex life, diet, alcohol intake and the psychological status, using direct questions in an anonymous questionnaire. Overall, 35.9% of patients had changes in their behaviour after discovering they were HCV positive (i.e. paying more attention to avoid transmitting the infection), with no significant differences between those who had or had not received information from their general practitioner. A significant increasing trend, in relation to years of HCV positivity, was only observed, however, in the patients who had been counselled by their GP, suggesting two important considerations. First, the fear of transmitting the infection to other members of the family is one of the patients’ most important concerns, as recently suggested in a study by Minuk et al., where fear of infecting family members was the third greatest concern of newly diagnosed HCV patients.16 Second, this stresses the central role of the GP, who can correctly influence the patient's behaviour.
As regards sexual behaviour, regardless of any counselling received from the GP or the years of HCV positivity, one in four patients changed their sexual habits after learning they were HCV positive. Remarkably, 11.8% and 4% of patients reported avoiding or limiting the frequency of sexual intercourse respectively. Considering the low rate of sexual transmission of HCV, this comes as a surprise, especially for patients with stable partners. According to the 2002 NIH guidelines, specific precautions (i.e. use of condoms) are recommended only for patients with multiple partners.17 There is a gender-related difference in the changes in sexual habits in all age brackets. The basic precautions relating to sex activities are adopted more by men than by women. This may be due to the instinctive association between the potential presence of the virus in the semen and the risk of infection.
Another aspect explored in this study was the influence of HCV infection on the patient's diet. About 50% of patients changed their diet after being told they were HCV positive, with no differences emerging in relation to the years of HCV positivity of the information received from the GP. This is because it is generally believed that certain foods can harm the liver (e.g. fried food, cured meats), though there is no solid evidence that any foods can significantly affect liver function. The recently published AASLD guidelines suggest that obesity can affect the natural history of chronic hepatitis C, but no specific foods to avoid are mentioned.18
It is worth emphasizing our findings on alcohol intake, which is recognized as one of the most important co-factors for the progression of liver disease, especially in northern Italy.19 Of note is that alcohol intake in this region mainly involves wine and is generally consumed at lunch and dinner. This habit is normally accepted by the general population and also based on the conviction that it is beneficial, particularly for manual workers. About 70% of our HCV-infected patients stopped or restricted their alcohol intake when they learned they were HCV positive. Probably this rate is overestimated by the fact that the patients were seeing an hepatologist, and were probably aware of the problems with alcohol and the liver, suggesting that more effort is needed in educational programmes to further modify this habit in over 30% of HCV-positive patients who continue to drink alcohol.
The last issue explored in our survey was the impact of HCV infection on the psychological status. A profound, negative psychological impact was reported by over 40% of our patients, and remained apparently stable with time. It is impossible to tell from our data whether this may have to do with the fact of carrying a chronic infection, concern about the possibility of premature death, or limitations on lifestyle. Moreover, the negative psychological impact was significantly higher in women. This predominance may be related, in some way, to the concerns about the ability to fulfil expected gender roles, such as pregnancy and childcare.20
In most cases, HCV infection has a profound impact on the infected person's life, relationships and psychological well-being. Almost 60% of patients, particularly the younger subjects, strongly believe that treatment for hepatitis C is always necessary. As, with the available drugs, <30% of patients with chronic hepatitis C are eligible for antiviral treatment, a determined effort by the doctor is need to provide correct information.21 Our data indicate that HCV-infected people often have a very poor understanding of their condition. A great need for detailed information emerged from this study, providing grounds for the counselling and appropriate management of HCV-infected people.
Our study has certain limitations. First, the questionnaire was administered before the visit and anonymously. Although this procedure has some advantages, such as high adherence rate, it does not allow to evaluate any correlation with the clinical data (alanine transaminase levels, in particular), which may have an impact on lifestyle. Second, some fields, such us family behaviour and psychological status, were evaluated with generic queries which need to be deeply investigated in future. For instance, as for the negative impact of HCV infection on psychological status, the relationship with anxiety, fears and depression has not been evaluated. Different and more appropriate instruments must be used to elucidate these aspects. Third, the results may be a risk of a referral bias. In other words, the participants were probably those who are interested in their health, more prone to learning about HCV and, therefore, not completely representative of newly diagnosed patients, as supported by the fact that over 50% were seeking treatment. Fourth, the impact of the counselling provided by the specialist remains to be determined and should be assessed in future.
In conclusion, our findings strongly support the need to offer adequate counselling and provide educational programmes for patients and for GPs. Doctors must be aware that HCV infection is not just a cause of chronic liver disease. Though educating patients is a time-consuming and consequently expensive procedure, there is no doubt, that it would have a favourable impact on lifestyle.
This study was supported by a grant from Regione Veneto (Progetto Regionale 77/02).
Part 1: Demographic data
(1) Who addressed you to our hepatitis clinic?
(2) Have you received adequate information about HCV infection from your general practitioner?
(3) Have you ever heard about HCV infection?
If so, where?
(4) How long have you known that you have hepatitis C?
(5) Do you think you know how you acquired hepatitis C?
(6) If so, how?
Contact with infected objects
(7) Has HCV positivity changed the way you behave with your family?
(8) If so, how? _________________
(9) Has HCV infection changed your sex life? _________________
(10) If so, how?
(11) Have you changed your diet since you were diagnosed with hepatitis C?
(12) Do you drink alcohol (wine, beer, other beverages)?
(13) If so, have you changed your drinking habits since you were diagnosed with hepatitis C?
(14) Has HCV infection changed your psychological status?
(15) If so, how?
(16) Do you think a specific therapy is necessary for your hepatitis C infection?
I don't know
(17) Do you need more information about HCV transmission and the disease?