For the first time since the epidemic began 30 years ago, the health-related quality of life of Western Australians living with HIV/AIDS has been examined as part of a comprehensive international study.
Dr Susan Herrmann from Murdoch University's Institute for Immunology and Infectious Diseases (IIID) said the study utilised PROQOL-HIV, an instrument developed and validated with input from 11 countries.
Findings from the 102 WA residents who took part in the study have revealed long-standing emotional issues to do with perceived stigma, relationship intimacy and chronic ill-health.
"Increased tolerability of antiviral therapy and reduced pill burden and dosing frequency have had positive influences on health-related quality of life; however, social and emotional factors related to the infection are diminishing it," Dr Herrmann said.
"Over two-thirds of those who took part in the in-depth interviews which informed PROQOL-HIV admitted to fear and anxiety related to social stigma surrounding the disease, while a third of patients said worries of disclosure and infecting others were often or always on their mind.
"This fear has resulted in individuals limiting their lives through avoidant behaviours which are often disproportional to risk."
Dr Herrmann said avoidance included withdrawing from situations that could lead to the spilling of blood, such as contact sports and cooking for others, and that several feared situations such as a car accident in which they might be required to tell emergency workers of their condition.
Those with HIV also admitted to struggling with romantic relationships, fearing rejection by potential partners and fearing transmitting the disease despite safer sex strategies.
"This often irrational level of fear suggests an undiagnosed anxiety among people with HIV, one which clinicians may be able to address so as to help people resist limiting their lives unnecessarily," Dr Herrmann said.
"A lot of this is bound up in stigma related to HIV, both in the form of discrimination by those who relate infection to some form of deviance, and self-judgement, in which a person accepts these views and feels deserving of disapproval."
Dr Herrmann said she would continue to work with colleague Dr Elizabeth McKinnon whose statistical expertise had enhanced the utility of the data collected during the study. The team is currently working with the same international researchers on developing a new health related quality of life instrument for use in hepatitis C.
The study is published in Health and Quality of Life Outcomes.