Hepatitis B (HBV) and hepatitis C (HCV) are major public health problems with 350 million and 150 million infections worldwide, respectively.1 Due to their asymptomatic development, their diagnosis often occurs during blood donation. The prevalence of concordant HBsAg and anti-HBc tests is 213 per 100,000 donations in São Paulo, while confirmed anti-HCV reactivity is 287 per 100,000 donations.2 Several studies have shown that patients with HBV or HCV may present emotional, social or psychological disorders that can impact their health-related quality of life (HRQOL) even when asymptomatic or in the presence of minor symptoms.3,4

HRQOL refers to a patient's subjective assessment or perception of his/her complete physical, mental and social well-being, including a range of conditions not limited to medical interventions.5 The assessment of HRQOL has proven to be an effective tool to understand the subjective impact that diseases have on patients. Several instruments are available to evaluate the biomedical and psychosocial aspects used to measure HRQOL. These instruments are classified as generic or specific.6 Generic instruments can be universally applied and allow comparisons between different diseases or different populations. Specific instruments are capable of estimating the quality of life associated with specific aspects of diseases (e.g., diabetes or asthma), populations (e.g., seniors) or functions (e.g., functional capacity or sexual function). The instrument most commonly used to measure HRQOL is the Medical Outcome Study 36-Item Short Form Health Survey (SF-36), which is a generic instrument with questions divided into eight domains. Answers are converted into numerical values, with higher scores representing better HRQOL.7

Generally, HRQOL is impaired in patients with chronic liver disease regardless of the etiology, and the level of the scores has been associated with disease severity. In HCV where HRQOL has been most studied, it has been proposed that the mere presence of HCV causes a drop in quality of life.8 Moreover, a notable decrease in HRQOL has been detected in HCV-positive blood donors unaware of their condition.9 Another hypothesis is that the impact of the diagnosis of hepatitis C causes a reduction in HRQOL in carriers.10 For hepatitis B, HRQOL studies are more frequent in endemic areas such as regions of immigrants from Korea11 and in patients from Singapore.12

The aim of this study is to evaluate the impact of the diagnosis of HBV and HCV on HRQOL during the notification and counseling process in a population of seropositive blood donors.

Over a period of 29 months, 211 blood donors with reactive screening tests for HBV and HCV were enrolled. Among them, 32 were diagnosed with HBV, 35 with HCV and 38 had screening tests that were reactive for HCV that were not confirmed in the additional confirmatory test and were considered false-positive results. The remaining 106 (50%) donors with reactive serologic screening tests for HBV or HCV did not complete all the phases of the follow-up and were excluded.

Demographic data of the donors diagnosed with HBV, HCV and false-positive results are described in Table 1. There was a significant difference in age between the false-positive controls (average 31.5±7 years) and the HBV (36.2±9.7 years) and HCV (37.1±10.8 years) groups (p-value=0.046 and p-value=0.03, respectively).

The HRQOL scores were quite similar between patients with HBV and HCV and donors who presented false-positive results at the time of the serological screening tests in phase 1 of the study. Considering all donors were under the same stress conditions (i.e., uncertainty about the likelihood of having a health problem because they were recalled to repeat the serological tests), the stress of the investigation appeared to be effectively reflected in the HRQOL. Compared to the HBV and HCV groups, the false-positive controls showed improvement in HRQOL scores after notification that the confirmatory tests were negative (Time Point 2) and that they had no serologic evidence of HBV, HCV or other transfusion-transmitted diseases. The relief provided by the negative confirmatory results improved the HRQOL of the false-positive controls compared to the group of donors with HBV and HCV. In this study, no differences in HRQOL were found on comparing the HCV and HBV groups at this very early stage of the disease because both groups were subjected to the same stress due to uncertainty regarding a possible infectious disease.

The choice of generic instruments or specific instruments for liver disease in the assessment of the HRQOL was based on its widespread use in Brazil, previous experience of the study institution and the instruments’ reproducibility.15 Specific instruments to assess HRQOL linked to liver disease, such as the Liver Disease Quality of Life Questionnaire, have been validated and applied in this institution.16 However, these instruments were not employed in this study because they could not reliably be applied to blood donors without liver disease. In contrast, the SF-36 is useful and applicable both to patients and to the general population.

In several studies on HRQOL in HCV, the starting point was patients who had already received their diagnosis compared with control groups in different stages of their disease.17 The originality of this evaluation was its longitudinal character that was designed to address the patients before and after diagnoses of HBV or HCV. Unexpectedly, we observed improvement in four out of eight domains in the summarized SF-36 physical component scale from Time Point 1 to Time Point 3 among HCV-positive donors. Thus, in contrast to the hypothesis suggested by Groessl et al.,10 the knowledge of the diagnosis did not lead to worsening of the HRQOL in patients with HCV, but to an improvement. This perception of improved HRQOL was obtained by Time point 3 during clinical care. The availability of adequate clinical monitoring and a customized treatment with detailed explanations of the evolution and prognosis may be responsible for the improvement in HQROL.18 In fact, at this stage the main concerns of donors were intensively addressed. These concerns included doubts about the natural history of their illness, the availability of treatment and the possibility of receiving free medication and ongoing clinical support. Additionally, HCV and HIV share major routes of transmission. Therefore, some of the patients with HCV may have felt relieved at not being HIV carriers because the latter is recognized as a much more stigmatizing infection.

The lower HRQOL in Time point 1 may be related to HCV causing fatigue and a reduced sense of well-being, as demonstrated by Forton et al.19 Additionally, studies have linked the decline in HRQOL to the presence of the virus in the central nervous system.20 In later stages (especially in Time point 3), there was an improvement in the HRQOL scores when patients began their clinical follow-up. This increase may be associated with stress relief due to knowing the real condition of their health, more detailed knowledge regarding HCV infection and the availability of antiviral therapy as mentioned above. Indeed, it was previously demonstrated that there was a decrease in HRQOL in patients with chronic HCV when the diagnosis was transmitted by an unprepared medical staff.21

In contrast to HCV, the longitudinal analysis of the group diagnosed with HBV showed no significant differences in any of the domains of the SF-36. Despite the prospect of a clinical follow-up, issues related to the severity of the disease and concerns about the transmission of a serious health problem to their family and contacts may represent important components that explain the low HRQOL.22 Moreover, patients with HBV showed a worse HRQOL than the false-positive control group, especially during Time point 2. The lower HRQOL scores in the HBV group and the false-positive control group can be attributed to the initial stress caused by the necessity of submission to a laboratory investigation of these donors. The possibility of diagnosis of HIV infection may be a cause of worry for most individuals who have to repeat the serological tests; this concern may be associated with the emergence of physical and emotional symptoms. A similar situation occurs among blood donors who are diagnosed as HIV positive. Cleary et al.23 demonstrated the development of symptoms and emotional disorders among HIV-positive donors. In our population, the nonspecific complaints of pain and feelings of malaise reported during this phase may have decreased the health of these individuals as a whole, thereby contributing to the drop in their HRQOL scores.

Differences found in the longitudinal assessment of HBV and HCV may be related to the different possibilities of viral clearance for these two viruses.1 The current rates of elimination of HCV after treatment range from 50% to 85% of cases according to the virus genotype. In chronic hepatitis B infection, the chances of serological clearance of the virus with or without continuous treatment are smaller (approximately 10–30% of cases). The requirement for continuous care and the therapeutic possibility of evolution to hepatocellular carcinoma even before the appearance of cirrhosis are relevant concerns that can affect the HRQOL.24

There are some limitations in this study. First, there was a considerable loss to follow-up along the course of the study. The fear of having an infectious disease may have led some donors not to attend the blood center at all phases of the study. However, we were able to recruit a sufficient number of donors to identify significant differences in several domains of the SF-36 both in the longitudinal analysis and in the comparative analysis between the groups. Second, a participation bias may have influenced our results. Participants may have been more concerned about their health than non-participants. Consequently, the effects on HRQOL may be overestimated among the participants. Finally, the control group was not necessarily composed of healthy subjects because donors with false-positive results may have an undiagnosed disease. Nevertheless, our selection of false-positive donors as the control group reduces the impact of recall bias because these donors were subjected to the same notification, counseling, retesting, and systematic interview procedures as the cases.25

The process of notification and counseling can affect the HRQOL among healthy donors and those infected with HBV and HCV. In contrast to HBV carriers, the possibility of medical treatment may improve the HRQOL of HCV-positive donors. Studies that provide a broader knowledge of HRQOL among healthy and infected blood donors can aid the implementation of public health policies not only by providing a broader and more comprehensive approach by health professionals but also by promoting a more dignified and humanized approach to these individuals.

The authors declare no conflicts of interest.