A Web-based Research Study

Introduction

Research has shown that a diagnosis of genital herpes (GH) creates psychological distress or social adjustment issues in a substantial number of patients. Much of this research, however, dates back to the early and mid-1980s, prior to the widespread availability of newer diagnostic techniques and anti-viral medications for herpes simplex virus (HSV). Given changes in the clinical management of genital herpes, along with evolving cultural attitudes towards sexuality and sexual health issues, further research was needed to define the current psychosocial impact of a genital herpes diagnosis. ASHA conducted a Web-based survey of herpes patients to assess the quality-of-life impact of a herpes diagnosis.

Objectives

Through this study, funded by 3M Pharmaceuticals, ASHA sought to answer the following research questions.

1. What healthcare experiences do people with genital herpes generally have in terms of interactions with health care providers? Insurers? Pharmacies?
2. What do people with genital herpes think about medication for genital herpes? How do they learn about it?
3. How does having genital herpes effect psychosocial well-being? What other factors influence psychosocial well-being in people with genital herpes?
4. How does having genital herpes affect sexual behavior?
5. Are there positive aspects to having genital herpes? If so, what are they?

Activities

• Demographic questions and responses were adapted or modified from existing research instruments; a 17-item instrument measured the following: physical health, mental health, social health, general health, perceived health, self-esteem, anxiety, depression, pain, disability, and anxiety-depression
• Entire instrument was pilot tested twice to identify system errors, inform question and response wording, and assess overall functionality of the survey
• Instrument was posted to the Internet at www.ashastd.org using the Inquisite? survey and data collection package; responses were collected.
• Data set was exported to SPSS© where inclusion/exclusion functions and comparative analyses were conducted; data were analyzed for significance and implications determined
• Responses to text, or free, questions were analyzed using NVivo©. Independent researchers developed and tested a coding scheme using a sub-sample of responses. All responses were coded according to such themes, and frequencies calculated

Outcomes

Findings of interest include the following:

• Of the respondents who reported having GH, most based their diagnosis on clinical signs and symptoms (versus a lab diagnosis).
• Almost three fourths were initially on prescription medication that was, in most cases, first suggested by their health care provider.
• The majority of respondents were satisfied with medication because they have shorter, milder outbreaks with few side effects.
• Respondents were, in large part, dissatisfied with the resources and referrals offered by many health care providers.
• Compared with people who say they do not have genital herpes, people with genital herpes scored lower on mental health and self-esteem scales.
• A large number of people with GH reported one or more positive impacts as a result of their diagnosis.

Contact Information

This project is completed. If you would like to let us know how this research or any of the associated resources have been used in your work, please contact us at P&RFeedback@ashastd.org.