International Survey Uncovers Need for Improvements in Genital Herpes Management

PARIS -- Many people living with genital herpes are not satisfied with how this common infection is managed, according to the results of a year-long international survey of patients and physicians presented at this weekend's 10th annual meeting of the International Herpes Management Forum (IHMF). The survey also uncovered issues and concerns with diagnostic methods, impact on sexual relations and approaches to treatment. The survey, called INSIGHTS, the International Herpes Management Forum (IHMF)/Novartis Pharma AG/International Herpes Alliance (IHA) Genital Herpes Treatment Survey, was conducted primarily via the Internet, and included responses from 2,075 patients and 622 physicians from more than 90 countries.

One out of two patient respondents (51 percent) said they were dissatisfied with the answers and attention their physicians provided about the physical aspects of the condition (e.g., symptoms, pain management) upon diagnosis. The majority of patient respondents (63 percent) were also dissatisfied with the answers and attention regarding social and emotional issues provided by their physician, and many (36 percent) felt their physician was unsympathetic when diagnosing the condition.

In the physician arm of the survey, nearly all physicians (98 percent) said it was important to address the psychological impact of genital herpes with patients when initially diagnosed with the infection.

"When people are first diagnosed with genital herpes they are hungry for information about both the physical and psychological impact of the condition," said Claire Hurst, chair, International Herpes Alliance. "Physicians may provide some degree of information and counselling, but this survey found that there is a gap between how much and what type of information people living with the infection want and what they are actually getting."

Patients surveyed reported that their major concerns upon being diagnosed with genital herpes were the impact on their sex/love life (53 percent), whether it was curable (37 percent) and how easily the virus can be passed, or transmitted, to others (36 percent). An overwhelming majority (93 percent) said that genital herpes affected their sex life. Importantly, in the physician arm of the survey, 59 percent of physicians said they were comfortable talking to their patients about sexual practices in the context of genital herpes.

Additionally, most patients told someone they had genital herpes - 69 oercent told their partner, 43 percent told friends and 33 percent told family. Of those who told someone, however, 71 percent found it difficult to do so.

"It is understandable that patients are concerned about the impact that genital herpes will have on their sex lives, particularly because patients can transmit the virus to their partner even when they do not have signs of the infection," added Hurst. "That is why it is so important that organizations like the IHA continue to provide patients with advice and tools for how they can tell people, especially their sexual partners, that they have genital herpes. The more people talk about genital herpes, the more people will understand it, learn to live with it and reduce the chance of transmission."

Although genital herpes is a lifelong infection, it can be managed with information, education and the effective prescription of antiviral medications. Patients can take these medications to speed healing when symptoms appear (episodic therapy) or can take them daily as a preventive measure to reduce the number and severity of outbreaks (suppressive therapy). Seventy-five percent of patient respondents said their physician recommended a prescription medication at diagnosis, and 66 percent of those found the prescription useful.

When told that taking medication every day could significantly reduce the number of outbreaks, 84 percent of survey respondents said they would be likely to take it. However, among the 65 percent of respondents reporting current use of a prescription antiviral medication, less than one-third (30 percent) took it suppressively. Answering a question on barriers to therapy, 21 percent of patients said they did not know they could take a medication every day.

Correct diagnosis has been cited as a major issue in the control of genital herpes given that many persons with the infection do not recognize its symptoms. Even for health care professionals, in fact, recent studies have shown that diagnosing genital herpes based on physical evidence alone is unreliable.

In this survey, more than half of patients surveyed (58 percent) reported that their physicians diagnosed them with genital herpes based on a laboratory test (e.g., through culture or blood test). This diagnostic practice adheres to IHMF guidelines recommending that diagnosis of genital herpes be confirmed by reliable assays. One-third of patients (34 percent), however, reported that their physicians made a diagnosis solely based on physical examination.

"The findings of this survey provide health care providers with important information about how sexually transmitted diseases like genital herpes are diagnosed and managed in real-life clinical practice," said David Patrick, MD, associate professor of medicine at the University of British Columbia and member of the IHMF Board. "The IHMF is committed to providing physicians with the proper information and tools needed to accurately diagnose and treat genital herpes and to working with the IHA to improve physician-patient interaction and overall patient outcomes."

Genital herpes patients were surveyed from February 2002-January 2003, primarily via the IHA Web site ( Physicians were surveyed from December 2001-December 2002, primarily via the IHMF Web site ( and at a series of international medical meetings. INSIGHTS was designed to gain a better understanding of patient needs and physician perceptions on genital herpes management. The surveys did not match patients to their physicians.

"We are pleased with the overwhelming response to the survey and will continue to support IHMF and IHA in their efforts to disseminate these important findings to physicians and patients worldwide," said Robert Charnas, PhD, global medical director for Novartis Pharma AG.

Thirty-six percent of patients in the survey were diagnosed for less than one year. Sixty-six percent of patients were single, 16 percent were living with someone and 18 percent were married. The most commonly reported healthcare professionals to diagnose patients in the survey were general practitioners (39 percent) and obstetrician/gynaecologists (29 percent). Physicians who completed the survey may have been more attuned to genital herpes management; thus, their experiences may not reflect that of the wider physician community.

Genital herpes is caused by the herpes simplex virus (HSV). HSV-1 is the virus that primarily causes cold sores in the mouth but can also cause genital herpes through oral genital contact. HSV-2 is transmitted sexually and is usually the primary cause of genital herpes. Despite affecting millions of people worldwide, approximately 80 percent of people with genital herpes do not know they are infected.

The International Herpes Management Forum (IHMF) comprises international specialists involved in all aspects of the clinical management of herpesvirus infections. Through debate and an exchange of knowledge, the Forum aims to provide practical guidelines for healthcare professionals who treat herpesvirus infections.

The International Herpes Alliance (IHA) is a charity organization dedicated to advancing the wellbeing of people with genital herpes, and to optimize the care and information available to people with herpes around the world. It is supported by national patient groups, national and regional governmental organizations and the pharmaceutical industry.