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.

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n the United States, 50 million people have genital herpes. Approximately 17% of adults have antibodies 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 diagnosed 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 immunosuppressed 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, diagnosis, 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 herpes. 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 recently documented that antiviral medications can

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(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).. Auerbach. early studies on the psychological impact of genital HSV included only patients with symptomatic disease (Carney. Issue 3 321 . To the researchers’ knowledge. this research documented limited or no psychological impact of a HSV-2 diagnosis. Silver. and newsletters) for completing the survey. L.. Rosenthal et al..00 if they submitted one provider and one to three patient surveys. 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. Providers were directed to a web site with study instructions and consent forms. Ikkos. and internal medicine) or obstetrics and gynecology. Each provider was asked to complete a provider survey and recruit and obtain verbal consent to complete patient surveys from three recently diagnosed women with genital HSV (only the patient results are presented here).. 2004).000 randomly selected physicians who were American Measures Demographic and Health Care Characteristics Patient participants were asked a brief series of standard demographic questions (age. 2005. and the lack of morbidity for many infected people has the potential to reduce the stigma and gravity of a diagnosis. The study limited patient participation to three per provider for several reasons: to complete the study in a timely fashion. 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. & Mindel. e-mail invitations were sent from professional organizations to over 8. Knowledge about how common an HSV infection is. English speaking. 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 participate. the availability of treatment to limit symptoms and transmission. Methods Study Design This was a cross-sectional study of 101 individuals who had been diagnosed with genital HSV in the past 4 months.Women were eligible to participate if they were newly diagnosed with genital HSV (within the past 6 months). Kent. 2000). 1995). gender.. No identifying patient data were collected.. 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). It is unknown if advances in our understanding of genital HSV infections have affected women’s reaction to a diagnosis. and Nanda. Owing to a lack of accurate serological tests. Providers received $200. and (c) diagnosed genital HSV using serology. recent studies focused on individuals who report no current or past genital HSV symptoms (Meyer et al. 2007. Vishniavsky. Medical Association members and to over 1. and 18 years of age or older.Mark. eligible physician and nurse practitioner providers agreed that they (a) practiced in one of the specialties that commonly diagnose HSV: primary care (general practice. RESEARCH not only reduce HSV recurrences. H. books. The purpose of this study was to assess the psychosocial well-being and quality of life among women newly diagnosed with symptomatic genital HSV. Miyai.g. Richards et al.800 nurse practitioners belonging to the National Association of Nurse Practitioners in Women’s Health. JOGNN 2009. These studies noted elevated levels of depression and anxiety along with decreased quality of life among patients. there have been no recent studies on the impact of a diagnosis on women with genital HSV symptoms. 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 understanding of the signi¢cance of HSV infection and/ or the absence of symptoms. Smith et al. 1994. J. 38. Ross.. & Tocki. Women received educational materials and resources (e. In order to participate. & Klausner. Turner. to limit the potential for historical bias. Vol. In an e¡ort to assess the impact of screening. Gilbert. It is unknown if or how greater understanding of genital HSV infection a¡ects women’s reactions to a diagnosis and infection. CDs. No follow-up study was conducted. family medicine. 1986. & Kaplowitz. Swanson. All study procedures were approved by an independent review board. 2004. Dibble. Subjects and Procedure In late 2006 and early 2007. 2006. In contrast to early studies. but also reduce transmission of HSV to sexual partners (Corey et al. Bunker. and to give equal weight to patient responses without disproportionate provider e¡ects.

2) 28 (33.2) 9 (10.6) 2 (2.2) ethnicity.2) a Table 1.76 for depression (Petrak.23) 56 (67. out-patient. 2009.1552-6909.org .0) 63 (75.8) 26 (31. with 8 to 10 borderline. A score of 0 to 7 in either subscale is considered normal.86 for depression (Montazeri. HAD 5 Hospital Anxiety and Depression. 320-326.5) 14 (16. the Cronbach a was .9) 30 (36.9) 56 (67.3) 37 (44.8) 7 (8.3) 42 (50.74 for anxiety and .x http://jognn. 38.2009.88.69 for total. Ebrahimi. 2000).78 for anxiety and . and education level) and health care questions (diagnosis method. and 11 or over indicating clinical ‘‘caseness.awhonn. & Baker.3) 31 (37. Byrne. & Jarvandi. depression.4) 48 (57. Among 167 local and metastatic breast cancer patients the Cronbach a was . Continued Number (%) HAD scores Depression 28 (33.8) 47.4) 31 (37.89. Possible scores on each scale range from 0 to 21.8) 1 (1.’’ The HADS was found to be a reliable instrument for measuring psychological well-being among 303 female genitourinary clinic attendees. and .3) 17 (20. . RGHQOL 5 Recurrent Genital Herpes Quality of Life. 2003).2) Normal RGHQOL scale: mean (SD) Note. These questions were replicated from prior surveys (Table 1).4) 75 (90. Vahdaninia.4) 1 (1.0) 7 (8. provider type.1) 4 (4.4) 1 (1.9) 5 (6.5) 24 (28. Seven anxiety and seven depression questions each have 4-point Likert scale answers that range from 0 5 very much to 3 5 not at all.7) 9 (10.0) Moderate-severe Borderline Normal Anxiety Moderate-severe Borderline 53 (63. and community settings.8) 322 JOGNN.01026.9) 21 (25. HSV 5 herpes simplex virus. a Categories are not mutually exclusive. race.RESEARCH Well-Being and Quality of Life With Herpes Table 1: Participant’s Demographic and Diagnostic Information (N 5 83) Number (%) Patient age (years) 15-24 25-34 35-44 45-54 55 and older Patient race White Black or African American Asian Other (specify) Don’t know/not sure Patient ethnicity Hispanic/Latino Non-Hispanic Don’t know/not sure HCP type Nurse practitioner OB/GYN PCP HSV diagnosis Visual exam Culture Blood test Description of symptoms Other Medication options discussed Daily suppressive Episodic None Unknown Medication options selected Daily suppressive Episodic Waiting to decide None 23 (27. DOI: 10.7) 10 (12.71 (17. Recurrent Genital Herpes Quality of Life Scale The RGHQOL scale is a 20-item questionnaire that collects information on the impact of genital HSV on 45 (54.5) 4 (4. and medications discussed).7) 21 (25. The Cronbach a in the present study was .9) 5 (6. and anxiety subscales. 7 (8.1111/j. Hospital Anxiety and Depression Scale The HADS is an instrument designed to detect the presence and severity of mild degrees of mood disorder and has been used in hospital.

A number of individual RGHQOL items were endorsed frequently as being either quite or very di⁄cult problems and are presented in Table 2.0 50. 1999). The fewest number of women endorsed the following three items: ‘‘I feel isolated from other people because I have herpes’’ (endorsed by 25. An international research team tested the reliability and validity of the RGHQOL with 242 subjects from the United States. RESEARCH quality of life in ¢ve domains: self-esteem. & good (Cronbach’s a 5 . More than two thirds were between the ages of 15 and 34 years old and the majority was White. Participants respond to each item using a 4-point Likert scale from 0 5 very much to 3 5 not at all. HADS. personal relationships. and 10. Most (76%) diagnoses included a visual exam and/or culture. The mean score of the RGHQOL scale was 47. 38. The Cronbach a in the present study was . Table 1 presents the sample characteristics of the subjects. ‘‘Because I have herpes. and depression subscales were calculated.93) (Spencer. when used among French women with genital herpes internal reliability consistency for the RGHQOL instrument was very ' ge. seven women who had been diagnosed by serology only were removed from the analysis. social functioning.97.6 57. Statistical software was used to conduct frequencies and distributions of demographic characteristics. Data Analysis and Statistical Methods Eleven male subjects were removed from the analysis because of the potential for confounding. Internal consistency reliability as measured by Cronbach’s a was shown to range from . and France.4%). and 60.93 to .2 63. The ¢nal sample had 83 subjects.1998). United Kingdom.7 Results Thirty-four providers recruited one to three subjects each.2).. Anxiety and depression were common in this population with 33.8% de¢ned as HADS cases on the depression subscale and 63.Mark. In addition. and Table 2: Genital Herpes-Related Quality of Life: Items Cited by 50% or More of Participants % Reported ‘‘Very’’ or Item I worry about giving herpes to someone I worry that I am going to have an outbreak of herpes I feel ashamed of having herpes It is di⁄cult to forget that I have herpes I worry about people I know ¢nding 59. cases on the anxiety subscale. and Nanda. sexual functioning. In addition. Issue 3 323 .8 JOGNN 2009.9 ‘‘Quite’’ Concerned 74.9% de¢ned as HADS an outbreak of herpes I feel insecure about personal (intimate) relationships because of herpes Herpes makes me feel unclean I feel angry about having herpes I worry that people will reject me if they know I have herpes Herpes a¡ects my self-con¢dence Herpes is a¡ecting my sex life 53.0 63. I become tense when someone touches me’’ (endorsed by 26.97 (Doward et al. H. The findings from this study suggest that the impact of a genital herpes diagnosis for women with symptoms has not lessened. The test-retest reliability ranged between .97 at time 2 with a high follow-up rate.8% were considered normal on the anxiety subscale.8 55.0 out I have herpes I worry about getting into stressful situations because it could cause 59. L. Germany. Gilbert. Leple Ecosse. diagnostic information. mean and standard deviation of the RGHQOL. a higher score was indicative of a better quality of life and fewer problems with herpes. Italy.7 (SD 17.4 55. Standard criteria were used for cuto¡s to determine HADS subscales.93) in this population. A total RGHQOL score was calculated by summing across items. J.9 60.8% of the participants were considered normal on the depression subscale. Denmark. Only 57. with a possible range of 0 to 60.5% of women planned to use either daily suppressive or episodic therapy to treat their infection. The instrument also revealed good test-retest reliability (r 5 . Vol. Additionally. and mental health.86 and .4 57. and RGHQOL scores. anxiety. because the focus of this analysis was on patients with symptomatic genital HSV.91 to . total HADS.1%). ..96 within countries at baseline.

Table 2 lists the frequencies for the most commonly reported items. it is critical for providers to understand the value of antiviral therapy. including transmission and the impact on sex life (Melville et al. therapeutic options. Warren and Ebel (2005) suggested that follow-up visits designed to talk with patients 324 JOGNN. Satisfaction with attention to physical symptoms and treatment was independently associated with receiving a brochure or fact sheet (adjusted OR 5 2. Richards et al. This study reinforces the results of a 1993 study of patients with recurrent genital HSV. a recent study of individuals diagnosed with asymptomatic herpes found that 56% worried a great deal or a lot about giving herpes to someone. Rosenthal. culture. 2009. The women in this study were diagnosed based on clinical signs (e. & Grant. it is di⁄cult for me to show a¡ection’’ (endorsed by 28.org . symptomatic and asymptomatic recurrences. 2005). Daily antiviral therapy reduces the frequency of recurrences by approximately 75% and the rate of transmission by 48% (Warren & Ebel. Patel.075 patients from 78 countries indicated that satisfaction with attention to emotional and social issues was independently associated with duration of initial visit greater than or equal to 15 minutes (adjusted OR 5 5. 2006). Strand.. patients have important concerns related not to the physical nature of the disease but to the social consequences.g. 2004.3%).49) and being o¡ered an antiviral prescription (adjusted OR 5 1. Miyai et al. and the likely impact of herpes on their sex lives (Patrick et al. Price. 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. Stanberry. Ross.34). 2003. Tyring. This same survey found that to improve patient satisfaction. This study supports others’ ¢ndings that upon diagnosis. A survey of 2. Ikkos.RESEARCH Well-Being and Quality of Life With Herpes Reports from clinical experts and patients suggest that the way a diagnosis is given and the accompanying material are important factors affecting psychological impact. Numerous clinical experts have suggested counseling strategies and approaches for patients who have genital herpes.. & Ebel. 2004). 320-326. Patrick. In contrast. This study highlights the signi¢cance of symptoms on the morbidity of genital HSV. 2005.2009. An important part of diagnosis and counseling is informing women of treatment options and choosing a treatment that best meets the needs of the individual. 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 treatment to limit symptoms and transmission. This study also found a negative impact on quality of life related to a genital HSV diagnosis (Table 2). In addition.01026. 1999).. patients diagnosed with genital HSV wanted information about transmission. 1993. In comparison.. visual exam.1552-6909.1994).. Over 67% of the women in this study reported worrying a great deal or quite a lot about giving herpes to someone. 38. Although there have been no studies that have assessed 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 accompanying material may play an important part in the psychological impact. 2004). given the signi¢cance of symptoms for genital HSV morbidity. ‘‘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.awhonn.1111/j.72).. DOI: 10. 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¡erence on measures of mood disturbance between individuals who tested negative for HSV and those who tested positive (Meyer et al. and 56% reported feeling very or quite insecure about personal (intimate) relationships because of herpes. 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. and 30% felt insecure about personal relationships because of herpes.14) and being o¡ered a prescription (adjusted OR 2. at least 25% of the participants indicated they were ‘‘very’’ or ‘‘quite a lot’’ concerned. Hurst. 2007). Advice has included addressing both the medical and psychosocial aspects of the infection such as prevalence rates. On every item on the quality of life scale. antiviral medication. or a description of symptoms). and the usual lack of long-term impact on general health.. & Mindel.x http://jognn. the impact of a genital herpes diagnosis for women with symptoms has not lessened. Suppressive therapy in persons with frequently recurring disease can provide major medical and psychological bene¢t (Carney.

. Renton. Importance of herpes simplex virus type-1 (HSV-1) in primary genital herpes. C. & Baker.. C. The e¡ect of suppressive oral acyclovir on the psychological morbidity associated with recurrent genital herpes.. A. G. (b) have a ‘‘herpes person’’ in the o⁄ce who can spend extra time with women who need it. 6 (1). S.. Herpes. Carney. et al. The association between abuse in childhood and STD/HIV risk behaviours in female genitourinary (GU) clinic attendees. & Ebel. Byrne. 457-459. Finally. Petrak. A.. Tyring. Carney. (2005). 86 (2). Patrick. The psychosocial impact of testing individuals with no history of genital herpes for herpes simplex virus type 2. 143-153. Finally. I. DithmerSchreck. descriptive study using a convenience sample... A. L. O. 31. E. Sexually Transmitted Infections. a diagnosis of genital HSV through clinical symptoms continues to cause psychosocial morbidity and impact on quality of life.. however. D.. (2003). 27 (1). M. O.. D.. (2004). 81. 11. frequency. 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