JOGNN RESEARCH

Psychosocial Well-Being and Quality of

Life Among Women Newly Diagnosed
With Genital Herpes
Hayley Mark, Lisa Gilbert, and Joy Nanda

Correspondence
Hayley Mark, PhD, RN,
Department of Community—
Public Health, Johns
Hopkins University, School
of Nursing, 525 North Wolfe
Street, Room 449 Baltimore,
MD 21205-2110.
hmark1@son.jhmi.edu
Keywords
herpes
depression
quality of life
anxiety
ABSTRACT
Objective: To assess the psychosocial well-being and quality of life among women with a new genital herpes simplex
virus diagnosis.
Design: Data were collected by a cross-sectional survey.
Participants: Eighty-three women diagnosed with genital herpes simplex virus by culture, visual exam and/or a
description of symptoms within the last 3 months were recruited from primary health care clinics by their provider.
Measures: Participants completed the Hospital Anxiety and Depression Scale and the Recurrent Genital Herpes
Quality of Life scale.
Results: Thirty-four percent of the women qualified as ‘‘clinical cases’’ for depression, and 64% were designated as
‘‘anxiety cases’’ based on Hospital Anxiety and Depression Scale scoring methods. A majority of participants reported
feeling ashamed about having herpes and worried about having an outbreak or giving herpes to someone else.
Conclusions: Despite substantial progress toward understanding genital herpes simplex virus epidemiology and
transmission, a diagnosis of genital herpes continues to cause considerable psychosocial morbidity and to impact
quality of life. There is a dearth of good evidence on how best to intervene to minimize the psychological impact of a
diagnosis. Experts recommend addressing both the medical and psychological aspects of infection by providing
antiviral therapy, written material, and resources.
JOGNN, 38, 320-326; 2009. DOI: 10.1111/j.1552-6909.2009.01026.x
Accepted March 2009

Hayley Mark, PhD, RN, is
an assistant professor in the
Department of
Community—Public
Health, Johns Hopkins
University, School of
Nursing, Baltimore, MD.
Lisa Gilbert, PhD, is vice
president of Research and
Health Communication,
Division of Research and
Health Communications,
American Social Health
Association, Research
Triangle Park, NC.
Joy Nanda, ScD, is an
epidemiologist in the
Department of Population,
Family and Reproductive
Health, Johns Hopkins
University, School of Public
Health, Baltimore, MD.
n the United States, 50 million people have genital
I herpes. Approximately 17% of adults have anti-
bodies to herpes simplex virus type 2 (HSV-2) and
58% have antibodies to HSV-1 (Xu et al., 2006).
While HSV-1 is the primary cause of oral-labial
herpes, and HSV-2 causes genital infection, HSV-1
accounts for increasing proportions of newly diag-
nosed primary genital HSV (Coyle et al., 2003;
Lamey & Hyland, 1999; Nieuwenhuis, van Doorum,
Mulder, Neumann, & van der Meijden, 2006;
Schillinger et al., 2004). The clinical manifestations
of genital HSV infections range from the truly
asymptomatic to severe disease among immuno-
suppressed individuals or intrapartum infected
neonates. In most cases, however, the physical
manifestations of genital HSV are unremarkable,
with most people unaware of their infections
(Brugha, Keersmaekers, Renton, & Meheus,1997).
Information on the epidemiology, transmissibility, di-
agnosis, and treatment associated with genital HSV
has increased substantially in the past decade and
in ways that may a¡ect the impact of a diagnosis. In
1999, type-speci¢c serological assays that detect
HSV-1 and HSV-2 antibodies became commercially
available allowing for wide-scale screening for her-
pes. Multiple studies, including the National Health
and Nutrition Examination Survey, indicate higher
rates of HSV-2 than previously suspected ranging
from 17% in the general population to 40 to 70%
in HIV positive individuals (Russell, Tabrizi, Russell,
& Garland, 2001; Stamm et al., 1998; Xu et al.,
2006). In addition, although it was originally
thought that all cases of HSV were symptomatic,
it is now clear that most people are unaware
they are infected, and the majority of infections
are transmitted by these individuals. It was also re-
cently documented that antiviral medications can

320 & 2009 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses http://jognn.awhonn.org
Mark, H., Gilbert, L. and Nanda, J.
not only reduce HSV recurrences, but also reduce
transmission of HSV to sexual partners (Corey
et al., 2004).
It is unknown if or how greater understanding of
genital HSV infection a¡ects women’s reactions to
a diagnosis and infection. Owing to a lack of accu-
rate serological tests, early studies on the
psychological impact of genital HSV included only
patients with symptomatic disease (Carney, Ross,
Bunker, Ikkos, & Mindel, 1994; Silver, Auerbach, Vis-
hniavsky, & Kaplowitz, 1986; Swanson, Dibble, &
Tocki, 1995). These studies noted elevated levels of
depression and anxiety along with decreased qual-
ity of life among patients. In an e¡ort to assess the
impact of screening, recent studies focused on indi-
viduals who report no current or past genital HSV
symptoms (Meyer et al., 2005; Miyai, Turner, Kent, &
Klausner, 2004; Richards et al., 2007; Rosenthal
et al., 2006; Smith et al., 2000). In contrast to early
studies, this research documented limited or no
psychological impact of a HSV-2 diagnosis.
Knowledge about how common an HSV infection is,
the availability of treatment to limit symptoms and
transmission, and the lack of morbidity for many in-
fected people has the potential to reduce the stigma
and gravity of a diagnosis. It is unclear whether
study ¢ndings documenting little impact of testing
positive for HSV-2 among individuals who do not
recall symptoms is related to an altered under-
standing of the signi¢cance of HSV infection and/
or the absence of symptoms. To the researchers’
knowledge, there have been no recent studies on
the impact of a diagnosis on women with genital
HSV symptoms. The purpose of this study was to as-
sess the psychosocial well-being and quality of life
among women newly diagnosed with symptomatic
genital HSV.
Methods
Study Design
This was a cross-sectional study of 101 individuals
who had been diagnosed with genital HSV in the
past 4 months. Each respondent was asked to
provide demographic information and complete
the Hospital Anxiety and Depression Scale (HADS)
and Recurrent Genital Herpes Quality of Life
(RGHQOL) instrument at one point in time. No
follow-up study was conducted.
Subjects and Procedure
In late 2006 and early 2007, e-mail invitations were
sent from professional organizations to over 8,000
randomly selected physicians who were American
JOGNN 2009; Vol. 38, Issue 3
RESEARCH
It is unknown if advances in our understanding of genital
HSV infections have affected women’s reaction to a
diagnosis.
Medical Association members and to over 1,800
nurse practitioners belonging to the National Asso-
ciation of Nurse Practitioners in Women’s Health.
A provider response rate cannot be calculated
because there was no method of con¢rming the
number of e-mails received or those eligible to par-
ticipate. In order to participate, eligible physician
and nurse practitioner providers agreed that they
(a) practiced in one of the specialties that
commonly diagnose HSV: primary care (general
practice, family medicine, and internal medicine) or
obstetrics and gynecology; (b) practiced in a high
volume clinic (de¢ned in the recruiting materials as
diagnosing an average of ¢ve or more women with
genital HSV per month); and (c) diagnosed genital
HSV using serology.
Providers were directed to a web site with study in-
structions and consent forms. Each provider was
asked to complete a provider survey and recruit
and obtain verbal consent to complete patient sur-
veys from three recently diagnosed women with
genital HSV (only the patient results are presented
here).Women were eligible to participate if they were
newly diagnosed with genital HSV (within the past
6 months), English speaking, and 18 years of age
or older. The study limited patient participation to
three per provider for several reasons: to complete
the study in a timely fashion, to limit the potential
for historical bias, and to give equal weight to pa-
tient responses without disproportionate provider
e¡ects. Providers were sent three paper and pencil
patient surveys and one self-addressed stamped
envelope (SASE) to be returned to the American
Social Health Association (ASHA). Each recruited
patient was asked to complete the survey and seal
it in the envelope (for privacy) and give it to their
HCP who would place it in the SASE for return to
ASHA. No identifying patient data were collected.
Women received educational materials and re-
sources (e.g., books, CDs, and newsletters) for
completing the survey. Providers received $200.00
if they submitted one provider and one to three pa-
tient surveys. All study procedures were approved
by an independent review board.
Measures
Demographic and Health Care Characteristics
Patient participants were asked a brief series of
standard demographic questions (age, gender,
321
RESEARCH Well-Being and Quality of Life With Herpes

Table 1: Participant’s Demographic and Table 1. Continued

Diagnostic Information (N 5 83) Number (%)

Number (%) HAD scores

Patient age (years) Depression 28 (33.8)

15-24 26 (31.3) Moderate-severe 7 (8.4)

25-34 31 (37.3) Borderline 48 (57.8)

35-44 17 (20.5) Normal

45-54 4 (4.9) Anxiety

55 and older 5 (6.0) Moderate-severe 53 (63.9)

Patient race Borderline 21 (25.2)

White 56 (67.5) Normal 9 (10.8)

Black or African American 14 (16.9) RGHQOL scale: mean (SD) 47.71 (17.23)

Asian 5 (6.0) Note. HAD 5 Hospital Anxiety and Depression; HSV 5 herpes sim-
plex virus; RGHQOL 5 Recurrent Genital Herpes Quality of Life.
a
Other (specify) 7 (8.4) Categories are not mutually exclusive.

Don’t know/not sure 1 (1.2)

Patient ethnicity

Hispanic/Latino 7 (8.4)
ethnicity, race, and education level) and health care
Non-Hispanic 75 (90.4)
questions (diagnosis method, provider type, and
Don’t know/not sure 1 (1.2) medications discussed). These questions were
replicated from prior surveys (Table 1).
HCP type

Nurse practitioner 45 (54.2) Hospital Anxiety and Depression Scale

OB/GYN 28 (33.7)
The HADS is an instrument designed to detect the
presence and severity of mild degrees of mood dis-
PCP 10 (12.0) order and has been used in hospital, out-patient,
HSV diagnosis a and community settings. Seven anxiety and seven
depression questions each have 4-point Likert
Visual exam 63 (75.9) scale answers that range from 0 5 very much to
Culture 56 (67.5) 3 5 not at all. Possible scores on each scale range
from 0 to 21. A score of 0 to 7 in either subscale is
Blood test 24 (28.9)
considered normal, with 8 to 10 borderline, and 11
Description of symptoms 30 (36.1) or over indicating clinical ‘‘caseness.’’

Other 4 (4.8)
The HADS was found to be a reliable instrument for
Medication options discussed measuring psychological well-being among 303
female genitourinary clinic attendees; the Cron-
Daily suppressive 31 (37.3)
bach a was .74 for anxiety and .76 for depression
Episodic 42 (50.7) (Petrak, Byrne, & Baker, 2000). Among 167 local
and metastatic breast cancer patients the Cron-
None 9 (10.8)
bach a was .78 for anxiety and .86 for depression
Unknown 1 (1.2) (Montazeri, Vahdaninia, Ebrahimi, & Jarvandi,
Medication options selected 2003). The Cronbach a in the present study was
.89, .88, and .69 for total, depression, and anxiety
Daily suppressive 23 (27.7) subscales.
Episodic 21 (25.3)
Recurrent Genital Herpes Quality of Life Scale
Waiting to decide 37 (44.6)
The RGHQOL scale is a 20-item questionnaire that
None 2 (2.4) collects information on the impact of genital HSV on

322 JOGNN, 38, 320-326; 2009. DOI: 10.1111/j.1552-6909.2009.01026.x http://jognn.awhonn.org

Mark, H., Gilbert, L. and Nanda, J. RESEARCH

quality of life in ¢ve domains: self-esteem, social

functioning, sexual functioning, personal relation- The findings from this study suggest that the impact of a
ships, and mental health. Participants respond genital herpes diagnosis for women with symptoms has not
to each item using a 4-point Likert scale from lessened.
0 5 very much to 3 5 not at all. A total RGHQOL
score was calculated by summing across items,
with a possible range of 0 to 60; a higher score was
cases on the anxiety subscale. Only 57.8% of the
indicative of a better quality of life and fewer prob-
participants were considered normal on the
lems with herpes.
depression subscale, and 10.8% were considered
normal on the anxiety subscale.
An international research team tested the reliability
and validity of the RGHQOL with 242 subjects from
The mean score of the RGHQOL scale was 47.7 (SD
the United States, United Kingdom, Italy, Germany,
17.2). A number of individual RGHQOL items were
Denmark, and France. Internal consistency reliabil-
endorsed frequently as being either quite or very
ity as measured by Cronbach’s a was shown to
di⁄cult problems and are presented in Table 2. The
range from .91 to .96 within countries at baseline,
fewest number of women endorsed the following
.93 to .97 at time 2 with a high follow-up rate. The
three items: ‘‘I feel isolated from other people
test-retest reliability ranged between .86 and .97
because I have herpes’’ (endorsed by 25.4%);
(Doward et al.,1998). In addition, when used among
‘‘Because I have herpes, I become tense when
French women with genital herpes internal reliability
someone touches me’’ (endorsed by 26.1%); and
consistency for the RGHQOL instrument was very
good (Cronbach’s a 5 .93) (Spencer, Leple'ge, &
Ecosse, 1999). The instrument also revealed good
test-retest reliability (r 5 .93) in this population. The Table 2: Genital Herpes-Related Quality of
Cronbach a in the present study was .97. Life: Items Cited by 50% or More of
Participants
Data Analysis and Statistical Methods
Eleven male subjects were removed from the analy- % Reported ‘‘Very’’ or

sis because of the potential for confounding. In Item ‘‘Quite’’ Concerned

addition, because the focus of this analysis was on I worry about giving herpes to 74.7
patients with symptomatic genital HSV, seven wo- someone
men who had been diagnosed by serology only I worry that I am going to have an 63.9
were removed from the analysis. The ¢nal sample
outbreak of herpes
had 83 subjects. Statistical software was used
to conduct frequencies and distributions of demo- I feel ashamed of having herpes 63.9
graphic characteristics, diagnostic information, It is di⁄cult to forget that I have 60.2
HADS, and RGHQOL scores. Additionally, mean herpes
and standard deviation of the RGHQOL, total HADS,
anxiety, and depression subscales were calculated. I worry about people I know ¢nding 59.0
Standard criteria were used for cuto¡s to determine out I have herpes
HADS subscales. I worry about getting into stressful 59.0
situations because it could cause
an outbreak of herpes
Results
Thirty-four providers recruited one to three subjects I feel insecure about personal 57.8
each. Table 1 presents the sample characteristics of (intimate) relationships because of
the subjects. More than two thirds were between the herpes
ages of 15 and 34 years old and the majority was
Herpes makes me feel unclean 57.8
White. Most (76%) diagnoses included a visual
exam and/or culture, and 60.5% of women planned I feel angry about having herpes 55.4
to use either daily suppressive or episodic therapy
I worry that people will reject me if 55.4
to treat their infection.
they know I have herpes

Anxiety and depression were common in this popu- Herpes a¡ects my self-con¢dence 53.0
lation with 33.8% de¢ned as HADS cases on the Herpes is a¡ecting my sex life 50.6
depression subscale and 63.9% de¢ned as HADS

JOGNN 2009; Vol. 38, Issue 3 323

RESEARCH
Reports from clinical experts and patients suggest that the
way a diagnosis is given and the accompanying material
are important factors affecting psychological impact.
‘‘Because of herpes, it is di⁄cult for me to show
a¡ection’’ (endorsed by 28.3%). Table 2 lists the
frequencies for the most commonly reported items.
Discussion and Conclusions
The ¢ndings from this study suggested that despite
an increased understanding about the frequency of
occurrence of HSV-2 and the availability of treat-
ment to limit symptoms and transmission, the
impact of a genital herpes diagnosis for women with
symptoms has not lessened. This study reinforces
the results of a 1993 study of patients with recurrent
genital HSV, in which 14% of the subjects were de-
¢ned as HADS depression cases at the ¢rst visit
following a genital herpes diagnosis and 60% were
de¢ned as HADS anxiety cases (Carney et al.,1994).
This study highlights the signi¢cance of symptoms
on the morbidity of genital HSV. The women in this
study were diagnosed based on clinical signs (e.g.,
culture, visual exam, or a description of symptoms).
In contrast, recent studies which have focused
on subjects who were diagnosed with genital HSV
through a serological screening test and who did
not recall symptoms found little signi¢cant di¡er-
ence on measures of mood disturbance between
individuals who tested negative for HSV and those
who tested positive (Meyer et al., 2005; Miyai et al.,
2004; Richards et al., 2007). Providers should
consider the signi¢cance of symptoms on the
psychosocial impact of a diagnosis and allow
for more time or follow-up visits for women with
symptoms.
In addition, given the signi¢cance of symptoms
for genital HSV morbidity, it is critical for providers
to understand the value of antiviral therapy.
Suppressive therapy in persons with frequently re-
curring disease can provide major medical and
psychological bene¢t (Carney, Ross, Ikkos, & Min-
del, 1993; Patel, Tyring, Strand, Price, & Grant, 1999).
Daily antiviral therapy reduces the frequency of
recurrences by approximately 75% and the rate of
transmission by 48% (Warren & Ebel, 2005). An
important part of diagnosis and counseling is
informing women of treatment options and choos-
ing a treatment that best meets the needs of the
individual.
324 JOGNN, 38, 320-326; 2009. DOI: 10.1111/j.1552-6909.2009.01026.x
Well-Being and Quality of Life With Herpes
This study also found a negative impact on quality of
life related to a genital HSV diagnosis (Table 2). Over
67% of the women in this study reported worrying a
great deal or quite a lot about giving herpes to
someone, and 56% reported feeling very or quite
insecure about personal (intimate) relationships
because of herpes. On every item on the quality of
life scale, at least 25% of the participants indicated
they were ‘‘very’’ or ‘‘quite a lot’’ concerned. In com-
parison, a recent study of individuals diagnosed
with asymptomatic herpes found that 56% worried
a great deal or a lot about giving herpes to some-
one, and 30% felt insecure about personal
relationships because of herpes. Only 4% to 15%
of subjects indicated that they were very or quite
concerned about several of the items related to
quality of life (Rosenthal et al., 2006). This study
supports others’ ¢ndings that upon diagnosis, pa-
tients have important concerns related not to the
physical nature of the disease but to the social con-
sequences, including transmission and the impact
on sex life (Melville et al., 2003; Patrick, Rosenthal,
Stanberry, Hurst, & Ebel, 2004).
Although there have been no studies that have as-
sessed the e¡ectiveness of providers’ counseling
strategies for genital herpes, reports from clinical
experts and patients suggested that the way in
which a diagnosis is given as well as the accompa-
nying material may play an important part in the
psychological impact. A survey of 2,075 patients
from 78 countries indicated that satisfaction with
attention to emotional and social issues was inde-
pendently associated with duration of initial visit
greater than or equal to 15 minutes (adjusted
OR 5 5.49) and being o¡ered an antiviral prescrip-
tion (adjusted OR 5 1.72). Satisfaction with attention
to physical symptoms and treatment was indepen-
dently associated with receiving a brochure or fact
sheet (adjusted OR 5 2.14) and being o¡ered a
prescription (adjusted OR 2.34). This same survey
found that to improve patient satisfaction, patients
diagnosed with genital HSV wanted information
about transmission, therapeutic options, and the
likely impact of herpes on their sex lives (Patrick
et al., 2004).
Numerous clinical experts have suggested coun-
seling strategies and approaches for patients who
have genital herpes. Advice has included address-
ing both the medical and psychosocial aspects of
the infection such as prevalence rates, symptomatic
and asymptomatic recurrences, antiviral medica-
tion, and the usual lack of long-term impact on
general health. Warren and Ebel (2005) suggested
that follow-up visits designed to talk with patients
http://jognn.awhonn.org
Mark, H., Gilbert, L. and Nanda, J.
in more depth may be particularly helpful. During
the initial visit, many patients are often processing
the diagnosis internally while providers attempt
to give information. Patel (2004) stated that all
patients presenting with symptoms indicating a ¢rst
clinical episode of genital herpes should receive
treatment with antiviral therapy and diagnostic test-
ing. Warren (2004) listed four methods to deliver
information in a time-limited environment: (a) use
patient reading materials to the maximum; (b) have
a ‘‘herpes person’’ in the o⁄ce who can spend extra
time with women who need it; (c) refer patients to
good and accurate Web sites; and (d) know the
phone numbers of herpes support groups in your
area. Finally, many experts recommend a sympa-
thetic, nonjudgmental approach. Warren and Ebel
suggested stating in clear terms that having herpes
‘‘does not change the core of the person or make
them less worthwhile’’ (p. 464).
Limitations
The ¢ndings in this study should be interpreted in
the context of several limitations. First, this was a
cross-sectional, descriptive study using a conve-
nience sample. The depression and anxiety noted
in these participants could be related to other
factors such as premorbid functioning (e.g.,
interpersonal distress before screening) (Rosenthal
et al., 2006). In addition, frequency, painfulness, and
duration (severity) of physical symptoms for each
patient were not measured, which may in£uence
the impact of the diagnosis. Also, providers may
have selected women who had stronger reactions
to the diagnosis than others. Finally, the research-
ers did not collect data on the content or amount of
pre- and post-test counseling provided. Therefore, it
is not known how informed subjects were of the
epidemiology, transmissibility, diagnosis, and treat-
ment associated with genital HSV.
Conclusions
As a major source of primary care around the world,
nurses are frequently the providers who diagnose
genital HSV. This study indicates that despite sub-
stantial progress in our understanding of genital
HSV epidemiology and transmission, a diagnosis of
genital HSV through clinical symptoms continues to
cause psychosocial morbidity and impact on qual-
ity of life. There is a lack of systematic evidence
about how best to counsel and reduce psychologi-
cal morbidity in women with genital herpes,
however, it is likely that the accuracy and compre-
hensiveness of the information that women receive
and the way they receive it are important factors in
psychological adjustment.
JOGNN 2009; Vol. 38, Issue 3
RESEARCH
Acknowledgments
Funded by GlaxoSmithKline. The authors thank
Mitch Herndon, American Social Health Associa-
tion Scienti¢c Advisory Committee, and Aimee
Gallager.
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