Concerns about treatment, work and social life, and effects of discrimination continue to be major worries for men and women living with HIV according to the pilot phase results of the EMHF’s European HIV-related Quality of Life Review study.
Results from nearly 300 respondents were collated and analysed. Only 70% of respondents declared themselves ‘satisfied’ or ‘very satisfied’ with the quality of their life, suggesting that while advances have been made to improve their overall experience, they still need to see improvements in the areas of treatment, emotional as well as physical well-being.
Headline findings
- 40% respondents stated that they thought about their status most or all the time, but their experience of psycho-social factors appears to be largely influenced by gender
- Men reported little loneliness or low libido. Women, on the other hand, seemed particularly affected by these and also by anxiety and depression.
- Men expressed a higher degree of satisfaction than women in all areas except treatment where they regarded improvement of side effects as the number 1 area for improvement of their quality of life.
- Women declared experiencing a deterioration of their economic status, sense of identity and sense of purpose.
- A reduction of HIV-related discrimination also featured highly on women’s list of areas that could improve their quality of life.
- Whilst most respondents started treatment within one year of diagnosis, almost 40% did not for at least 2 years.
- Nearly 20% of those currently not on treatment stated that they felt that the potential side effects deterred them from taking medication. 23% of patients stated that they did not see why they should start treatment, as they felt fine.
- For those people taking medication, most felt that overall, their treatment was effective at controlling the disease. They indicated that fewer pills per day and the reduction of medication side effects were the main factors that improved their experience of drug regimens.
- 47% stated that they had been on 2 to 3 drug regimens so far.
Erick Savoye, Director of the European Men’s Health Forum said, ‘Many people living with HIV revealed real concerns with several aspects of their quality of life. These interim results provide some very interesting illustrations of the issues foremost in the minds of HIV positive individuals. A gender-based interpretation of these concerns can be very complex and we hope to be able to draw stronger and more precise conclusions when we publish the results of the second phase of this study in the second quarter of 2005.’
The EMHF has received the support of HIV patients’ organisations in France, Germany, Italy and Spain to publicise the existence of the study and disseminate questionnaires in their native language.
