Oka et al. BMC Public Health (2017) 17:568
DOI 10.1186/s12889-017-4416-3

RESEARCH ARTICLE

Open Access

Employment-related difficulties anddistressed living condition in patients with
hepatitis B virus: A qualitative andquantitative study
Taeko Oka1, Hiroaki Enoki2, Yukari Tokimoto3, Teruaki Kawanishi4, Meguru Minami1, Takahiro Okuizumi5
and Kiyohiko Katahira2*

Abstract
Background: In Japan, an estimated 400,000 people have the hepatitis B virus (HBV), many of whom were infected as aresult of group vaccinations. People with HBV face many challenges, including disease progression, employment-relateddifficulties, and increased medical expenses. The relationship between HBV victims’ daily life suffering and poverty
associated with HBV-related employment changes has not been examined. We aimed to clarify the employment-related
hardships experienced by Japanese HBV victims, and the relationships between these hardships and daily life suffering,
including poverty, through qualitative and quantitative analyses.
Methods: The study population comprised 11,046 people infected with HBV via group vaccination who filed lawsuits inJapan’s District Courts by 2014. First, we conducted a qualitative study (2013) using the KJ method, with 107 participants(68 men, mean age 58.9 years; 39 women, mean age 55.3 years). Semi-structured interviews were conducted covering
participants’ current condition, treatment, medical expenses, and life difficulties (employment- and family-related
problems). In 2014, we conducted a quantitative study. We mailed questionnaires to the entire study population,
investigating the topics covered in the interviews (response rate 60.1%). Daily life suffering was determined by responses
to the question “What do you think about your everyday life situation?” We performed binomial logistic regression
analyses to verify the relationships between daily life suffering and disease, employment, and income status.
Results: Interview data were integrated into seven islands: intention to work, lack of understanding of HBV in
the workplace, inability to buy life insurance, burden due to medical expenses, life failure, dissatisfaction withthe system, and wishing for life balance. The quantitative analyses showed significant positive correlations between daily
life suffering and liver cancer (odds ratio [OR] 1.47, 95% confidence interval [CI]: 1.00–2.17, p < 0.05), being a part-time/casual employee (OR 1.46, 95% CI: 1.11–1.92 p < 0.01), and an income below the national average (p < 0.01).
Conclusion: We qualitatively and quantitatively demonstrated that employment-related hardships and daily life suffering
are prevalent in people with HBV. Their likelihood of experiencing distress in daily life increases with increasing medical
expenses, insecure employment status (e.g., job loss) attributable to HBV, and the resulting poverty.
Keywords: Group vaccination, HBV, Employment difficulties and poverty, Distressed living conditions, KJ method* Correspondence: katahirakiyohiko@gmail.com
2
Research Institute of Clinical and Social Pharmacy, 4-510-1 Takano, Misato,
Saitama, Japan
Full list of author information is available at the end of the article© The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0
International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to
the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Oka et al. BMC Public Health (2017) 17:568

Background
In Japan, an estimated 400,000 people are infected withthe hepatitis B virus (HBV), a viral hepatitis that is oneof the most widespread infections in the country, mainly
as the result of group vaccinations. The Japanese Ministryof Health, Labour and Welfare (2015) had to provide relief
for these patients and implement permanent measuresagainst HBV [1]. Research challenges that are particularly
urgent include developing understanding of the difficulties
faced by HBV victims in their daily lives and their support
needs, and proposing appropriate welfare policies.
The lawsuit over drug-induced hepatitis B started in
1989, when five patients filed a complaint with the Sapporo
District Court about the causal relationship between thegroup vaccination they received in infancy and HBV infection damage [2, 3]. Seventeen years later, the plaintiffs won the lawsuit in the Supreme Court [4, 5]. Afterthe preparation of a “Basic Agreement” on the lawsuit
over drug-induced HBV in 2011 and apologies from theJapanese government, the Ministry of Health, Labourand Welfare established a “Committee on the Verificationand the Recurrence Prevention of the infection spread ofhepatitis B caused by the group vaccination” (hereafter the
Verification Committee) in 2012. The Verification Committee prepared a report stating that “the challenges in thenational system, the system framework, and the specificoperation caused the infection spread of hepatitis B in thelawsuit over drug-induced hepatitis B” [6].
That report noted that in contrast to European countries
and the US which have thorough vaccination safetycontrols, group vaccination was performed in Japan. In
addition, it was found that a combination of factors,
such as group vaccination performed on the same datein the same site, obligatory vaccination (with fines) forthe people, continuous use of injection devices for 40 years(from 1948 to 1988), and non-compliance with international standards set by the World Health Organization(WHO) expanded the damage.
Vaccination is performed to secure active immunity ofchildren in infancy whose immunity functions are immature
and who are in the phase of receiving infection prevention
activities. Children usually receive the vaccination individually in medical institutions. However, in Japan, many people
were gathered in one place (such as a community hall or
school) and group vaccination was performed as an efficientmeasure against infection. After the Second World War,
more than 700,000 patients had variola, diphtheria, typhoid,paratyphoid, epidemic typhus, tuberculosis, and polio, andimmediate prevention of the spread of epidemics acrossJapan was necessary by decreasing the number of epidemicrelated deaths, protecting human lives, and preventing economic loss. Vaccination efforts were directed by the general
headquarters, and under the 1948 Preventive Vaccination
Act, vaccination was compulsory and obligatory.

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Vaccination directives were that the injection needle
used for vaccination needed to be replaced with a needle
sterilized by dry or moist heating for each person who
received an injection, an injection barrel smaller than
5cm3 had to be used, and a newly sterilized injectionneedle used each time the barrel was filled with vaccine[7]. However, at that time, it was thought that if the injection needle was replaced it was not necessary toreplace the injection barrel to prevent infections.
Therefore, although the needle should have been sterilized
and replaced for each person, needles were actually continuously used. For the tuberculin reaction test, in addition
to provisions for the sterilization of injection devices andinjection needles, repetition of the operation and continued
use of needles until the tuberculin in an injection device
ran out without replacing the needle itself was allowed.
Under these conditions, 60–150 million vaccinations were
performed annually until the 1950s.
For group vaccinations, one doctor vaccinated 80 people
per hour for variola, 100 people for pertussis, 120 people
for the tuberculin reaction test, and 150 people for diphtheria, typhoid, paratyphoid, epidemic typhus, and so forth.
The large number of people that each doctor had to vaccinate made replacing the injection barrel for each person
difficult. Therefore, a small amount of body fluids flowedback into continuously used injection needles or barrels.
There is a risk that 0.0004 ml of contaminated blood used
for people with the virus might also cause infection, meaning HBV infection spread due to group vaccination [8].
Since the 1940s, it has been recognized that people
may become infected with hepatitis by blood transfusionor plasma injection, and that viruses may be transmitted
by insufficient sterilization of injection needles or barrels.
The WHO proposed “replacement of injection needles andbarrels in vaccination” in 1953 [9], but Japan did not follow
this recommendation. Finally, in the 1987 WHO proposal
for developing countries [10], it became a written rule that
injection needles and barrels be replaced for each person who received vaccination. Therefore, people started
using clean injection needles and barrels. However,before this 1987 WHO directive, many local communities had already started using disposable injection devices and fewer people were continuously using needles
and barrels.
Few studies on HBV infection damage due to groupvaccination are available, and limited qualitative studies [11, 12] have reported on the results of the damage
survey conducted by the Verification Committee. One
study revealed serious problems such as inadequate
medical institution reactions when the HBV infection
was found; social exclusion in medical institutions, publicorganizations, or offices; and an increasing number ofpatients who died of progression or exacerbation ofhepatitis. This is of particular concern as patients with

Oka et al. BMC Public Health (2017) 17:568

serious hepatic cirrhosis or liver cancer are required
to visit or stay in a hospital for 20 ~ 30 days each year.
In addition, some reports have highlighted the difficulties
in daily life faced by people infected with viral infections.
For example, people infected with HIV cannot avoid delay
in notification of the infection by the doctor [13], healthdamage such as opportunistic infection and liver diseases[14], and life-activity self-limitation due to discrimination
anxiety [15]. People infected with the hepatitis C virus(HCV) also suffer physical and mental pain, fear of prejudice and discrimination [16], and difficulties and economic
burden related to continued long-term care. The difficulties
faced by people who are infected with hepatitis are similar
to those faced by people with leprosy, including misunderstanding about infectivity (leprosy is less infectious),
extreme social exclusion due to the disease becoming
serious [17, 18], and self-stigma [19]. However, at thesame time, cases have been reported in which those concerned and their supporters expended effort for the relief
and prevention of recurrence of health damage, including
the formation of self-help groups for people infected withHIV [20], an epoch-making care promotion by the HIVpositive people campaign [21], and “beyond silence,” thelawsuit over drug-induced HBV [22].
The Verification Committee report includes the resultsof a survey of victims infected with HBV (1311 respondents) and bereaved families (103 respondents) who
came to a settlement. This states that the victims had nochoice but to change jobs (retirement, reallocation, andjob transfer, 24.1%), take pay cuts (70%), or were refusedentry to private insurance (27.3%) [1] during their struggle with the disease.
Despite the acknowledgement of these struggles, therelationship between the suffering experienced by HBVvictims in their everyday life and the poverty associatedwith resulting employment changes has not been analyzed.
Therefore, through qualitative and quantitative analyses, weaimed to clarify the employment-related hardship experienced by Japanese HBV victims, and determine the relationship between their everyday suffering, including
the resulting poverty.

Methods
Participants

In cooperation with the nationwide HBV plaintiff groupand its lawyers, the present study targeted 11,046 people
who were infected with HBV via group vaccination andhad filed a lawsuit in District Courts across Japan by
2014. A qualitative study using the KJ method extracted
common characteristics of these people (e.g., cause of
infection: vaccination or mother-to-child transmission,
pathology, age, sex, region, experience of discrimination,difficulty working, and family problems caused by infection), and selected 107 people who cooperated with

Page 3 of 12

requests for investigation. A postal quantitative questionnaire study targeting members of the nationwide
HBV plaintiff group (including the qualitative study
participants) received responses from 6525 people (response rate: 60.1%). Participants’ characteristics areshown in Table 1.
Data collection

We conducted semi-structured interviews for our qualitative study using the KJ method. Of the interview participants, 68 were male and 39 were female (average age:58.9 and 55.3 years, respectively). Each interview was
conducted by 1–4 researchers with a single interviewee,
and lasted 90–120 min. An interview guide was used,with questions designed according to the study’s goals
and reference materials such as reports of Verification
Committee meetings and surveys of patients with HCV[23]. The questions covered the patient’s situation immediately after infection and their current condition; medical institutions, treatment, and treatment expenses paidby the patient; life difficulties such as work- and familyrelated problems; and requests for government/social
aid. The interviews were conducted once and there was
no follow-up.
The quantitative questionnaire was administered by
mail. When designing the questions, in addition to integrating insights gained through the KJ method, we usedmeasurement scales as used in the reports of Verification Committee meetings, the Comprehensive Surveyof Living Conditions, and a quality of life index (i.e., theSF-36). The questions investigated the same topics
covered in the interviews.
Analyses

We attempted to clarify the employment-related hardships
experienced by patients with HBV from both subjective
and objective perspectives (i.e., individual-level causationand statistical relationships). Subjective and objective
factors were analyzed using qualitative and quantitative
methods, respectively.
Qualitative analyses were performed with interview
data using the KJ method [24]. Based on the purpose of
the research, relevant descriptions were extracted fromthe word-for-word record list created by consensus
between investigators, and transferred to 925 KJ labels.
Then, a narrow-sense KJ method was conducted via
group work with the 20 selected original labels by
multistage pickup. To ensure the credibility and validity ofthe qualitative research, the analyses were supervised by
Ms. Akiko Kawakita, who hosts the Mushin-kan—KJ
method education/training course, which teaches aninterview method to obtain good-quality data without
asking leading questions. In addition, as a supervisory

Oka et al. BMC Public Health (2017) 17:568

Page 4 of 12

Table 1 The attributes and answers to questionnaire of HBV Victims
Mean/Number

SD/%

Table 1 The attributes and answers to questionnaire of HBV Victims(Continued)

Mean

SD

Unemployed

56.8

10.4

Number

%

Male

4077

62.0

Female2504

38.0

Suffering

3073

47.1

Not suffering

3452

52.9

Age

Yes

1476

22.2

No

5175

77.8

Does the latest yearly income of yours fall into the following items?

Sex

Everyday Life Situations

Settlement acceptanceAccepted

3791

59.1

Not accepted

2624

40.9

Yes

2337

47.1

No

2621

52.9

Work-related problems

Debt-related problems
Yes

1911

38.5

No

3047

61.5

Does the present condition of your disease fall into the following items?
Number

%

Yes

1803

28.3

No

4573

71.7

Asymptomatic carrier

Chronic hepatitis
Yes

3313

52

No

3063

48

Yes

819

12.8

No

5557

87.2

Yes

692

10.9

No

5684

89.1

Cirrhosis

Liver cancer

Does the present employment forms of yours fall into the following items?
Number%Regular employee (full-time etc.)
Yes

1874

7.3

No

4777

92.7

Non-regular employee (dispatch, contract, temporary worker, etc.)
Yes

484

7.3

No

6167

92.7

Yes

740

11.1

No

5911

88.9

Part-time/casual employee

Number

%

Yes

424

7.7

No

4574

92.3

Yes

928

16.9

No

4574

83.1

Yes

1280

23.3

No

4222

76.7

Yes

1114

20.2

No

4388

79.8

Yes

703

12.8

No

4799

87.2

Yes

510

9.3

No

4992

90.7

0-1 million yen

1-2 million yen

2-3 million yen

3-4 million yen

4-5 million yen

5-6 million yen

function of our research process, we repeatedly confirmedwith researchers, doctors, lawyers, and people with central
roles in relevant agencies that our results were consistent
with the real employment situation and poverty of patients with HBV. The graphical explanation of the KJ
method describes the entire grouping processes from theoriginal 20 labels selected by the multistage pickup without omission. In this grouping, we called the perception ofunified label groups “nameplates,” and unified group labels “islands.” The symbols assigned to each island were
eventually unified into seven “symbol marks.” In the text,
the original labels, last nameplates, and symbol marks are
expressed as “”,< >, << >>, respectively.
To verify the statistical relationship between daily life
suffering and objective factors (present disease, employment, and income status), we performed binomial logistic regression analysis using daily life suffering as thedependent variable. Daily life suffering was determinedby answers to the questionnaire item “What do you
think about your everyday life situation?” Two of fivepossible answers (“I am suffering immensely” and “I amsuffering to some extent”) were assigned to the “suffering” group and awarded a score of 1 point. All otheranswers were awarded 0 points.

Oka et al. BMC Public Health (2017) 17:568

For the independent variables and questionnaire, theitems were mainly subjective, such as subjective healthcondition or needs. Therefore, we only analyzed responses
to objective questionnaire items that covered patient characteristics. These factors were used as independent variables in analyzing the relationship between subjective daily
life suffering and the objective situation. The independent
variables for current disease status were asymptomatic
carrier, chronic hepatitis, cirrhosis, and liver cancer (yes = 1
point; no = 0 points). The independent variables for current
employment status were regular employee (e.g., full-time),
non-regular employee (e.g., dispatch worker, contract
worker, temporary worker) part-time/casual employee,
and unemployed (yes = 1 point; no = 0 points). The
analysis of income status showed that all participants’
had incomes below 5,372,000 yen, which was the average income for Japanese households in 2012 according
to the 2013 Comprehensive Survey of Living Conditions [25]. The independent income variables were 0–1
million yen (≥0×< 1), 1–2 million yen (≥1×< 2), 2–3
million yen (≥2×< 3), 3–4 million yen (≥3×< 4), 4–5
million yen (≥4×< 5), and 5–6 million yen (≥5×< 6)(yes = 1 point; no = 0 points).
To determine the relationships between the independent variables and the dependent variable (daily life suffering), it was necessary to control for any subjective factorsthat might influence the dependent variable. Therefore,
we incorporated two control independent variables: workrelated problems (yes = 1 point; no = 0 points) and debtrelated problems (yes = 1 point; no = 0 points). Similarly,
we controlled for acceptance of a settlement offer (as thiswould impact the patient’s financial situation), using thecontrol variable settlement acceptance/non-acceptance(accepted = 1 point; not accepted = 0 points).
In the absence of a previous study showing the above
statistical relationships, we used the forced input method
to analyze relationships between variables. To analyze
the true effects of the variables, we first input the independent variables for current disease status (Model 1),
and then added current employment status (Model 2),
and finally income status (Model 3).
Furthermore, to prevent multicollinearity issues, weprepared a correlation matrix and checked for correlation coefficients of ±0.9 or more; no such coefficientswere observed. All analyses were performed using IBM
SPSS Statistics 22.

Results
Interview results

After completing two label group formation stages, data
were integrated into seven islands. The catchphrases foreach island were: intention to work, lack of understandingof HBV in the workplace, inability to buy life insurance,
burden due to medical expenses, life failure, dissatisfaction

Page 5 of 12with the system, and wishing for life balance. The completed KJ diagram (“Employment-related difficulties anddistressed conditions of living in hepatitis B virus victims”)
is presented in Fig. 1. An explanation of each of the sevenislands is provided below.
A. Intention to work
The interviewees spoke of their desire to work, using
language such as <<I’m concerned that the I wish to
work>>. Work was not only perceived as a means ofacquiring income, but also referred to as something theinterviewee’s liked doing or were motivated to do, conveying their strong determination to work.
B. Lack of understanding of HBV in the workplace
Despite their willingness to work, interviewees experienced discriminatory treatment because of HBV. For
example, interview participants reported an “employment
offer was withdrawn after submitting a medical examination report” and were “treated with prejudice because ofa lack of knowledge that HBV cannot be transmitted via
daily activities.” They also mentioned that they had“received complaints about taking a rest after receiving
interferon therapy during their lunch break and experiencing pain from its side effects.” Furthermore, some were
“fired after submitting a medical report when hospitalized,
and only found another job as a temporary employee.”
These statements suggested that participants <<experienced difficulties with employment because of a lack ofunderstanding about HBV>> .
C. Inability to buy life insurance
The interviewees reported they experienced a disadvantaged financial position if, for example, they were<<unable to buy private life insurance because of their
HBV diagnosis> > .
D. Burden due to medical expenses
The interviewees mentioned that they <had a hard life
overwhelmed by medical expenses>. For example, they
“paid for hospital expenses by making cutbacks in otherareas” and “paid medical expenses by going into debt.” Theinterviewees also noted that <medical expenses prevented
necessary treatments>. For example, they reported “feelinghopeless because essential medical examinations are notcovered by aid and they could not make payments,” and“needed to give up high-level medical treatment.” Thesestatements show how the interview participants struggled
to live a normal life because their <<high medical expenses
impacted on their lifestyle>> .

Oka et al. BMC Public Health (2017) 17:568

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Fig. 1 KJ Method Diagram “Employment-related difficulties and ‘distressed condition of living’ in hepatitis B virus victims

E. Life failure
Because of their disease, interviewees reported they
were financially crippled or <<found themselves in serious,
desperate straits>>. For example, “savings were drained
after losing their jobs because of HBV, and they werespending retirement allowances to pay for medical
expenses,” and they were “forced to retire and begin
several part-time day and night jobs; yet, their income
had declined by one-thirds.”
In such circumstances, some interviewees faced the
problem of “marriages ending after losing jobs and incurring significant debt to pay high medical expenses.” This
indicates that some interviewees were financially ruinedby high medical expenses, as their income was reduced

after losing their job because of their disease. In turn, thisled to relationship breakups with significant others.
The interviews also highlighted participants’ desperation. For example, many “had a suicide plan in case agovernment settlement would not be reached in court”
or were “considering suicide so as not to place further
burdens on family.”
F. Dissatisfaction with the system
One interviewee was <<not aware of available support
systems and was losing opportunities to make the most ofthem>>. Furthermore, other interviewees “did not know
about financial aid for medical expenses” and “did notknow about the services provided by municipal offices.”

Oka et al. BMC Public Health (2017) 17:568

G. Wishing for life balance
Interview participants reported that they <<wished forlife balance regarding medical treatments and work>>.
For example, they “wished to work and have an income
while receiving necessary treatments, and hoped tomarry and have their own families someday,” “wanted to
be a useful employee, but only if they could also receive
medical treatment and keep working,” and “sought both
job support and life support systems to achieve an independent and decent life.”
Binomial logistic regression analysis

The binomial logistic regression analysis with daily life
suffering as the dependent variable showed that for
current disease status (Model 1), there were significant
positive correlations with cirrhosis (odds ratio [OR] 1.47,
95% confidence interval [CI]: 1.02–2.12, p < 0.05) andliver cancer (OR 1.56, 95% CI: 1.09–2.25, p < 0.05).
When we added current employment status to themodel (Model 2), we observed significant positive correlations with cirrhosis (OR 1.47, 95% CI: 1.01–2.13, p < 0.05)
and liver cancer (OR 1.44, 95% CI: 1.00–2.08, p < 0.05).
We also observed a significant negative correlation withbeing a regular employee (OR 0.53, 95% CI: 0.42–0.66
p < 0.01), and significant positive correlations with being apart-time/casual employee (OR 1.52, 95% CI: 1.18–1.95
p < 0.01) or unemployed (OR 1.47, 95% CI: 1.19–1.82
p < 0.01).
In the model with both current employment status
and income status (Model 3), we observed significant
positive correlations between daily life suffering and livercancer (OR 1.47, 95% CI: 1.00–2.17, p < 0.05), being apart-time/casual employee (OR 1.46, 95% CI: 1.11–1.92
p < 0.01), and all income increments from 0 to 1 million
yen to 5–6 million yen (p < 0.01). In addition, the OR
was inversely proportional to annual income (OR 31.12–
5.17; see Table 2).

Discussion
Effect of current disease status on daily life suffering:
Medical expenses

In 2004, at least nine international studies reported on
the costs associated with treating HBV [26], and showedthat medical costs are a significant burden for patients.
Our qualitative study confirmed that patients with HBVface a worsening disease state, declining income resulting from employment-related difficulties, and increasing
medical expenses. As there is presently no cure for HBV,
patients face a long-term struggle with the disease. Consequently, many patients bear significant medical costs,
as highlighted in the label “my medical costs were around20 million yen.” Such costs include frequent hospital visits,
living-donor liver transplants not covered by insurance, andPage 7 of 12

the unavoidable use of private cubicles (before the introduction of Japan’s medical expenses subsidy system). Other
medical costs besides consultation and medicine include
examination, travel, and hospitalization expenses (e.g., foodand pajamas). Normally, private insurance provides support
in such emergencies, but in many cases, patients with HBVwere unable to take out or renew policies because “hepatitis
is not covered.” Consequently, medical expenses had amajor impact on patients’ lives, as highlighted by the label“paid for hospital expenses by making cutbacks in otherareas.” Increased medical costs due to deterioration of
disease state and decreased income due to employment difficulties occurred simultaneously. The long-term struggleof many patients resulted in “danger to life and existence.”
Our qualitative study showed an association between
the severity of cirrhosis or liver cancer and the probabilityof experiencing suffering in daily life. The increased probability of experiencing suffering in daily life after symptoms of HBV intensify may be natural. However, thesesevere symptoms may confer physical and financial burdens and increase daily life suffering. Although hepatitis,
including chronic hepatitis, qualifies patients for medical
subsidies, circumstances change when the disease progresses to cirrhosis or liver cancer; therefore, patients“feel hopeless because essential medical examinations
are not covered by aid and the inability to pay.” Somepatients “paid for medical expenses by going into debt,”
sold houses or farmland to pay expenses, or decided togive up treatment (“needed to give up high-level medical
treatments”).
The effect of income was no longer shown in Model 3,
with the significant positive correlation with HBV seenin Model 1 not found. Further, the OR for liver cancer was
reduced. However, these statistical relationships indicate
correlations, rather than direct causal relationships. Cases
that indicated direct causal relationships in the interview
data may be used to explain these results from a medical
expense perspective. Cirrhosis and liver cancer increased
the requirements for long-term hospitalization and advanced anticancer therapies not covered by insurance.
In these cases, disease status might have increased thelikelihood of daily life suffering by increasing the financial burden. Therefore, our quantitative results are consistent with those of our qualitative study, and confirm
their validity.
Influence of current employment status on daily life
suffering

Our results showed that patients with HBV were
demoted or forced to quit their jobs because of: 1)
deterioration of physical condition due to diseaseprogression, 2) decrease in working hours due tooutpatient or inpatient treatment, or 3) discriminatory
treatment based on prejudice or misunderstanding. WhenOka et al. BMC Public Health (2017) 17:568

Page 8 of 12

Table 2 Results of the binomial logistic regression analysis on the factors related to suffering among HBV victims
Factors

Responses

Present disease status

Present employment status

Income status

OR

95% CIOROR

95% CI

0.98

0.95–1.01

0.98

0.98–0.99**

0.97

0.96–0.98***

Male

0.98

0.84–1.15

1.13

0.95–1.33

1.16

0.97–1.39

Female1.00

Accepted

0.71

Not accepted

1.00

Yes

0.94

No

1.00

Yes

6.76

No

1.00

Yes

1.35

No

1.00

Yes

1.42

No

1.00

Yes

1.47

No

1.00

Yes

1.56

No

1.00

Age
Sex

Settlement acceptanceWork-related problems

Debt-related problems

Asymptomatic carrier

Chronic hepatitis

Cirrhosis

Liver cancer

Regular employee (full-time, etc.)

1.00
0.61–0.82***

0.70

0.80–1.10

1.11

5.77–7.91***

6.39

0.91–2.00

1.33

5.44–7.49***

1.00

0.98–2.09

1.47

0.99–2.20

1.01–2.13*

1.47

0.99–2.17

1.00–2.08*

1.47

1.00–2.17*

0.42–0.66***

0.90

0.71–1.15

0.75–1.35

0.96

0.70–1.32

1.18–1.95***

1.46**

1.11–1.92

1.19–1.82***

1.03

0.82–1.30

Yes

31.12

19.2–50.2***

No

1.00

Yes

29.83

No

1.00

Yes

16.76

No

1.00

0.98–2.07

1.43
1.00

1.02–2.12*

1.47
1.00

1.09–2.25*

1.44
1.00

1.01
1.00

Part-time/casual employee

Yes

1.52

No

1.00

Yes

1.47

No

1.00

Yes

7.77

No

1.00

Yes

5.45

No

1.00

Yes

5.17

No

19.8–44.9***
11.4–24.6***

5.32–11.3***
3.68–8.08***
3.46–7.74***

1.00

Model Χ (df)2

OR odds ration, CI confidence interval;

4.88–6.85***

5.78

0.95–2.22No

5–6 million yen

0.88–1.26

1.00

1.45

Yes

4–5 million yen

1.05

0.89–1.99

Non-regular employee (dispatch, contract,
temporary worker, etc.)

3–4 million yen

0.93–1.31

1.00

1.00

2–3 million yen

0.59–0.81***

0.69
1.00

1.00

No

1–2 million yen

0.60–0.81***

1.00

0.53

0–1 million yen

1.00

1.00

Yes

Unemployed

95% CI

722.2 (9)***812.8 (13)***1280.6 (19)***p < .001; p < .01; p < .05.

***

**

*

regularly employed people become irregularly employed,
their income significantly decreases; if they eventually
become unemployed, it leads to further deterioration.

The interviews revealed that some patients with HBVwished to work but faced barriers to securing employment,
including: 1) deteriorating physical condition concomitant

Oka et al. BMC Public Health (2017) 17:568

to disease progression; 2) reduction of working hours because of hospital commutes and time spent in the hospital;and 3) discriminatory treatment because of prejudice andmisconceptions. Therefore, they “made an effort to continue work while receiving treatment, but failed to foster
understanding in their workplaces,” and consequently, felt
pressured to accept demotion or dismissal. This represents
disease-attributed downscaling of employment status (e.g.,“fired after submitting a medical report when hospitalized,
and only finding another job as a temporary employee”).
Patients then faced a dramatic decline in income, for example, being “forced to retire and begin several part-time
day and night jobs; yet, my income has declined by twothirds” or “receiving 100,000 yen in pay from a part-timejob, which comes to 40,000 after subtracting national insurance, pension contributions, and medical expenses; this is
not enough to live on.” Eventually, as their disease progressed, some left work altogether, resulting in crisis (e.g.,“at wits end; nothing else to do but to receive advancepension payments and accept a benefit level at 70% of thenormal amount”).
Our quantitative study indicated that the likelihood ofdaily life suffering increased as employment status
moved from regular to less secure (→ “part-time/casual
employee” → “unemployed”); this finding is consistent
with the situation described in the interviews. This
forced acceptance of changes in employment status andconsequent crises was observed in the entire study
sample.
Influence of income status on daily life suffering

The analysis with patients whose incomes were lower
than the national per capita income indicated that lower
annual income was associated with an elevated chanceof experiencing daily life suffering. This group was forced
into less stable jobs (reflected in their reduced income),
while their medical expenses were higher than those ofhealthy individuals. Therefore, this association between
income status and daily life suffering difficulties is characteristic of patients with HBV.
Our qualitative study indicated that the specific causal
factor of daily life suffering represented by “current
disease status” was the increase in medical costs owing
to disease progression, and reflects household budget
expenditure. The specific causal factor of daily life suffering represented by “current employment status”
was the wage reduction attributable to employment
insecurity because of HBV. Our quantitative resultsfor participants with incomes below the 2012 average
per capita income (Comprehensive Survey of Living
Conditions) indicated that the likelihood of daily life
suffering increased as annual income decreased. Among
patients with HBV, this relationship should be discussedwith reference to increased medical expenditure andPage 9 of 12

decreased wages following the shift to less secure employment because of their HBV diagnosis.
This relationship between income status and daily life
suffering does not mean that daily life suffering occurs
simply because of earning a low income. Any interpretation of this relationship should be based on the understanding that the income status of patients with HBV isrelated to their increasingly insecure employment status,and medical costs account for a greater ratio of theirhousehold expenditure compared with those of healthy
individuals. Therefore, the relationship between income
status and daily life suffering, as described in this study,
is not simply a general trend but one particular to patientswith HBV.
Prejudice and discrimination related to HBV andtreatment

As highlighted, discrimination and discriminatory treatment stemming from misunderstanding and prejudice(also referred to as stigma) is problematic in an employment context. When HIV was first reported in theJapanese media, people living with HIV suffered fromopen stigmatization. Although there have been reports
in the media about HCV, there has been relatively little
coverage of HBV; however, we found reports of discrimination from people with HBV, especially regarding
employment.
Ellard and Wallace [27] from Australia’s La Trobe
University published a literature review of stigma, discrimination, and HBV based on 39 studies. They observed that “Evidence suggests that when stigma anddiscrimination are associated with people with chronic
hepatitis B it is primarily related to a poor understanding of prevention and transmission, and not linked toconcepts of moral deficit that characterize HIV- andhepatitis C-related stigma and discrimination” (p. 2).
To reduce HBV-related stigma and discrimination, they
recommend “developing an understanding of any relationship between levels and quality of knowledge about
hepatitis B, and stigma and discrimination” in future research (p. 4). As those authors suggested, we need toclarify the understanding of those who are prejudiced
and discriminate about HBV and the related stigma.
A countermeasure identified in the 2009 Basic Act on
Hepatitis Measures and established by the Japanese
Ministry of Health, Labour and Welfare was a researchgroup. The group was formed to better understand the
prejudice and discrimination directed toward patientswith hepatitis and to create guidelines for harm prevention. The group conducted research from 2011 to 2013,and published their results annually. Tatsuoka [28] summarized these results in a 15-page editorial. This proposed“measures to prevent prejudice and discrimination against
hepatitis patients” including: 1) viral hepatitis medication

Oka et al. BMC Public Health (2017) 17:568

and treatment development; 2) public relations activities
and education to raise awareness and spread accurate
knowledge about viral hepatitis transmission and treatment; 3) promotion of general education regarding
prejudice and discrimination as a complement to thesecore activities; and 4) defining direct and indirect systemic roles.
Such measures should be based on an understandingof current needs and context, including a system to receive complaints and requests for advice about prejudice
and discrimination, and systems for the prevention of,recovery from, and sanctions against victimization. For
national level anti-discrimination systems, the reportnotes that each country’s need for systems of some kindstems from its particular circumstances and historicalbackground. For example, the US has a Federal Americans
with Disabilities Act, the UK, Germany, and othercountries have anti-discrimination laws, South Korea
has a National Human Rights Commission, and Sweden
has an Equality Ombudsman.
Distressed living conditions

Patients with HBV in our study suffered from employment difficulties due to deterioration of disease condition and extreme poverty induced by medical costs, aswell as: 1) severing of ties (disruption of family economic situation due to factors such as unemployment
and medical costs); 2) life-threatening crises (severity ofcondition as a result of giving up treatments because offinancial difficulties); and, 3) loss of the will to live
(considering suicide because of poverty and deterioration of family relationships). These types of severe
damage, along with economic hardships, may negativelytransform people’s existence and ruin their lives, andare serious issues.
A study on individuals with subacute myelo-optic neuropathy (an iatrogenic disease caused by the drug clioquinol)
clarified the types of medicine-attributed damage they suffered; namely physical, psychological, financial, and social
damage [29]. A fact-finding study of victims of iatrogenic
HCV transmission raised similar concerns [23]. In addition,
along with the reconciliation of the lawsuit in June 2011,
won by efforts from the plaintiff group and its counsel,
victims affected by HBV due to group vaccination are now
able to receive some compensation, depending on the conditions after official recognition as a victim. Therefore, thesevictims should experience a less burdened life after receiving compensation in terms of “poverty in living”.However,were only able to include control variables for “whether reconciliation was made,” and it was not possible to analyze
the gap in living situations before/after compensation was
paid in those who answered “yes” to the question “whether
payment for reconciliation was made.” We would like toexamine this point in a future study.

Page 10 of 12

Urgent need to establish and implement measures toassist patients with HBVIn March 2015, the WHO issued “Guidelines for theprevention, care, and treatment of persons with chronic
hepatitis B” [30], as an estimated 240 million patients
had chronic HBV worldwide. Although the WHO’s direct approach to addressing the problem can be appreciated, those guidelines focus on treatment with antiviral
medications and the prevention of further infection (preventing transmission). The guidelines do not address the
economic and social issues discussed in our study (i.e.,
living and treatment expenses and employment-related
prejudice and discrimination).
In 2008, the WHO Commission on Social Determinantsof Health issued its final report, “Closing the gap in a generation: health equity through action on the social determinants of health” [30]. This report takes a holistic view ofthe social determinants of health. Based on that evidence,
M. Marmot, the chairman of that committee, described the“proportionate universalism,” [31] which represents makingsocial welfare systems proportionately more robust forpeople in the level of disadvantage (e.g., a lower annual income or weaker employment situation) while preserving
the universal natuer of social intervations. This idea is consistent with the findings of the present study that daily life
suffering experienced by patients with HBV is highly prevalent and associated with lower wages and increased
expenses.
Problems concerning medical treatment, the socialand economic problems of employment assistance,
and the elimination of prejudice and discrimination
are all pressing issues. Starting with Japan’s Basic Act
on Hepatitis Measures, national governments andinternational institutions (e.g., the WHO) should address the issues surrounding HBV infection throughthis kind of awareness.
Contribution and limitations

For our quantitative study, we selected 11,046 participants
who had been infected with HBV through group vaccinations and had jointly filed lawsuits in District Courts before
2014. We obtained 6525 responses (response rate: 60.1%).
Using both qualitative and quantitative analyses, we clarified the employment-related hardships experienced by patients with HBV, and determined the relationship between
their daily life suffering and their subsequent descent intopoverty. A 2015 study with 1311 patients with HBV in
Japan conducted by the Ministry of Health, Labour andWelfare did not evaluate this relationship. As it is estimatedthat more than 400,000 people have been infected with
HBV by various means, including group vaccinations, wewere unable to interview all infected persons.
Our study used self-report data, and it is likely thatthose with greater stigmatization/financial burdenOka et al. BMC Public Health (2017) 17:568

experienced a greater degree of suffering and might havebeen more likely to respond (i.e., self-report bias). Anotherlimitation of our study is the binary nature of the quantitative variables and the subjective nature of their formation,
which might have resulted in measurement error andinformation loss.

Conclusions
We demonstrated that people with HBV experience
daily life suffering associated with employment-related
hardships. Their likelihood of experiencing distress ineveryday life increased in proportion to: 1) increasing
medical expenses accompanying deterioration of theircondition; 2) increasingly insecure employment status
attributable to HBV; and 3) the resulting decrease in income. In addition, prejudice and discrimination had an
impact on these relationships.
Considering the results of the present study and previous
studies, the daily life suffering experienced by patients with
HBV is highly prevalent and associated with employmentrelated hardships (e.g., lower wages) and increases in expenses, and is characterized by distressed living conditions.
Patients with HBV need social support to help eliminate
prejudice and discrimination, and consideration of theirsocial vulnerability based on the idea of “proportional
universalism.”
Abbreviations
HBV: Hepatitis B virus; HCV: Hepatitis C virus; HIV: Human immunodeficiency
virus; KJ Method: Kawakita Jiro Method (developed in 1986); WHO: World
Health Organization
Acknowledgements
We are sincerely grateful for the cooperation of participating patients with
HBV and their lawyers from all over Japan.
Funding
This study represents a portion of the research outcomes of the Health
Labour Sciences Research Grant (Research title: A Study Concerning Facts
about the Spread of HBV through Group Vaccinations, etc., and Relief
Measures for the Victims [Research Number: H25-Shinkō-Shitei-011]; 2013
research representative: Yoshihiko Yamazaki [Nihon Fukushi University], 2014/2015 research representative: Taeko Oka [Nihon Fukushi University]). We
extend our deep gratitude to all who supported the present study.
Availability of data and materials
All participants signed a consent form explaining that responses would not
be published in a personally identifiable form. Our research passed research
ethical review under these conditions. The surveyed participants have filed alawsuit against the state (i.e., the Japanese government). The raw data havethe potential to affect the interests of surrounding litigation and policy, andtherefore cannot be shared.
Authors’ contributions
TO was responsible for the study design and drafting the manuscript. HE
analyzed the quantitative data and will be responsible for questions andcomments by referees. YT was responsible for analysis according to the KJ
Method. TK, a hepatitis physician, provided medical knowledge on HBV. MM
wrote the Introduction in both Japanese and English. TO provided
knowledge on law as an Attorney at Law. KK was responsible for past studies
on HBV and HCV (with TO), the quantitative analysis, and responses to thequestions and comments by referees (with HE). KK also serves thecorresponding author. All authors read and approved the final manuscript.

Page 11 of 12

Competing interests
The authors declare that they have no competing interests.
Consent for publication
Not applicable.
Ethical approval and consent to participate
We maintained participant confidentiality while implementing this study.
We obtained approval from the Research Ethics Board of Nihon Fukushi
University, and provided written and oral explanations to all participants
outlining the study’s aims, ethical compliance, and the voluntary nature ofparticipation. We implemented the study after receiving signed consent
forms from all participants.
In addition, we felt that it would be inappropriate to compare patients with
HBV directly by health status, employment status, and annual income, as
they had filed the lawsuit as a group, and to do so could create a conflict ofinterest. To avoid this, we used a dummy variable as an independent
variable to compare their various situations.

Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims inpublished maps and institutional affiliations.
Author details
1
Human Environment University, 3-6, Hanazonomachi, Matsuyama, Ehime,
Japan. 2Research Institute of Clinical and Social Pharmacy, 4-510-1 Takano,Misato, Saitama, Japan. 3Osaka University of Human Sciences, 1-4-1 Shojaku,
Settsu, Osaka, Japan. 4Sapporo Ryokuai Hospital, Hokkaido Health Coop,
1-6-30 Kitano 1-Jo, Kiyota-ku, Sapporo, Japan. 5Koendori Law Office,Hokuseiodori Bldg., 2F., Odori West 13-4, Chuo-ku, Sapporo, Hokkaido, Japan.
Received: 21 April 2016 Accepted: 12 May 2017

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