Introduction

Genital herpes, a sexually transmitted disease with no cure, is increasing around the world. In USA women the prevalence increased from 16.4% in 1990 to 22% in 1991, and it has clearly grown since then. One of the main reasons for it's spread is the absence of recognizable symptoms in up to 90% of those infected. Once diagnosed, the subject may experience social stigma, psychosocial morbidity - including lessened self-esteem - anxiety, depression, and other behavioral disorders. Counseling may help those with genital herpes get through the initial period of necessary psychosocial and social adjustment. Scientists at the American Social Health Association (ASHA), Research Triangle Park, have conducted a patient survey to investigate the need for improved education and counseling of newly diagnosed patients. Here's a summary of their report.

Method

Genital herpes patients, identified from a TV advertisement campaign for valacyclovir, an antiviral treatment for herpes, were sent a questionnaire in June/July 2001. Of 10,000 questionnaires sent out, 394 eligible replies were received (responders had to be 18 or over, and diagnosed with herpes in the last 5 years). The 26-item questionnaire included diagnostic and therapeutic approaches, types of healthcare providers, and time spent in education and counseling, as well as the quality of the latter.

Results

The eligible responders were mostly young (62% under 35), female (81%), single (59.5%), and living in a large city or suburb (56%). Over 80% had had a diagnosis confirmed by a lab test (serum or culture), with most of them diagnosed by a physician (71%) or a physician's assistant or a nurse practitioner (19%).

While most of the patients received a prescription (for treatment or suppression), 23% reported that they received no counseling, and 40% that their counseling at the first visit lasted less than 5 minutes. Asked to give reasons for the lack of adequate counseling, more than half the respondents said that embarrassment was the main barrier, with time constraints and difficulty in understanding the next main factors. Gender, race, and age were not considered factors in preventing good counseling.

Over 90% of patients thought that during the first 6 months after diagnosis was the important time for education and counseling. While clinical, factual topics were more likely to be covered by healthcare providers, there was a real need for more handling of emotional, or psychosocial topics. Thus correct condom usage and risk reduction for a partner were adequately treated, whereas prevalence, transmission, suppression of outbreaks, and management during pregnancy were less well taught. Only 45% of the subjects had a follow-up visit within the first 6 months.

Again, over 90% of the patients sought additional information - the Internet, toll-free phone numbers from TV advertisements, hotlines, books or magazines, library visits, and friends or family. The healthcare provider only supplied information on such resources in about half the cases.

An open-ended question "what suggestions do you have for improving genital herpes education and counseling from healthcare providers?" led to the expected responses: more information (33%), more resources (7.5%), and emotional support (7.5%). Surprisingly, 19% of patients reported that their healthcare provider was "not sympathetic".

Comment

The authors of this report identify the short initial counseling session and the lack of follow-up as representing a gap in patient care, especially for those experiencing psychosocial distress. Clearly more needs to be done to ensure that herpes sufferers receive sufficient knowledge about their disease and adequate emotional support to allow them to live as normally as possible, without risk of infecting others. Provision of sympathetic counselors who can lessen the natural embarrassment associated with the condition would help in achieving this.