INSIGHTS research

Global survey providing new insight into herpes diagnosis and management

The web-based INSIGHTS survey, conducted by the International Herpes Management Forum (IHMF) and the International Herpes Alliance (IHA), was designed to improve global standards of diagnosing and managing genital herpes. Results of the survey, which canvassed 2,075 people with genital herpes and 622 doctors worldwide from February 2002 to January 2003, were presented at the IHMFs 10th Annual Meeting in Paris last weekend. The results have been posted at www.ihmf.org. (pop up link)

The survey canvassed people's issues and concerns with diagnostic methods, impact on sexual relations and approaches towards treatment. The major findings were as follows:

Getting diagnosed

• 76 per cent of respondents visited their doctor after experiencing physical symptoms (lesions, blisters and a rash)
  
• Half (50 per cent) of the respondents sought help after experiencing pain or itching
  
• 20 per cent sought help due to fear or desire to learn more about their infection; 13 per cent from fear of transmission to others; 9 per cent sought care for another reason and 9 per cent because their physical symptoms had returned
  
• 34 per cent of respondents said that their doctor had diagnosed their infection based only on a physical examination. IHMF guidelines recommend that diagnosis of genital herpes be confirmed by reliable laboratory tests (culture or blood test).

Upon diagnosis

• People with genital herpes experience a wide range of "strong" emotions, from feeling hurt and upset, to depressed, scared, angry, ashamed, surprised and confused
  
• Many respondents were dissatisfied with how their infection was managed by their doctor from a physical (51 per cent), social and emotional perspective (63 per cent)
  
• 36 per cent felt their doctor was unsympathetic when diagnosing the infection
  
• The major concerns for respondents include the infection's impact on their sex / love life (53 per cent), whether the infection is curable (37 per cent) and how easily the virus can be transmitted to others (36 per cent)
  
• 93 per cent of respondents said the infection affected their sex life

Living with genital herpes

• 71 per cent of respondents said it was hard to tell someone they had genital herpes
  
• However, the majority (69 per cent) of respondents informed their partner and many told friends (43 per cent) and family (33 per cent)

Treating genital herpes

• 75 per cent of respondents said their doctor recommended a prescription medication at diagnosis, of whom 66 per cent found the prescription useful
  
• The respondents tend to treat symptoms as they occur, rather than reducing their overall number of outbreaks
  
• Of those respondents using antiviral treatments, only 30 per cent use daily (suppressive) therapy to reduce their number and severity of outbreaks
  
• When told that taking medication daily could significantly reduce their number of outbreaks, 84 per cent of respondents said they would be likely to take it
  
• 21 per cent of respondents were unaware that they could take a medication every day to control their outbreaks.

Demographics

• Thirty-six per cent of the survey respondents were diagnosed with genital herpes less than a year:
  
• 75 per cent of whom were female and 25 per cent male
  
• 66 per cent of whom were single, 16 per cent living with someone and another 18 per cent married
  
• The respondents were most commonly diagnosed by GPs (39 per cent) and obstetrician/gynaecologists (29 per cent)
  
• The survey was completed on the IHA website - www.herpesalliance.org