Australians living with HIV have among the highest levels of satisfaction with their HIV care. New research considered Australian data from the international Positive Perspectives 2 study. It looked for differences between people with HIV in Australia and other countries. Despite the positive overall results, Australian participants were unhappy with their mental health. They also had concerns about long-term side effects of HIV treatment. These concerns are not always addressed by HIV care providers.
What is Positive Perspectives 2?
This web-based survey was conducted in 2019. It gathered data from 2,389 people on HIV treatment, including 120 from Australia. It looked for differences in treatment attitudes and behaviours. The aim was to identify unmet needs and improve ‘person-centred’ care.
What is person-centred care?
Person-centred care goes beyond achieving undetectable viral load. It aims at good quality of life. This happens when people with HIV can talk to their doctor freely about their mental and physical health. The doctor listens and offers solutions. Together, people with HIV are partners in their own care.
What is the ‘fourth 90’?
Good quality of life has been proposed as the ‘fourth 90.’ What does this mean?
Back in 2013, UNAIDS set three targets for ending the HIV epidemic.
- 90% of people with HIV know their status.
- 90% of diagnosed people are on treatment.
- 90% of people on treatment have undetectable viral load.
Researchers and community leaders have pushed for a fourth 90. Quality of life is more than viral suppression. It underpins everything we do.
What the research found
- Most participants had an undetectable viral load (97%).
- Most participants were satisfied with their HIV care (83%).
- Most participants were not stressed about taking their pills each day.
- A third reported needing help with their mental health (35%).
What about side effects?
Certain issues were concerns for people with HIV in all 25 countries surveyed. These include side effects, the number of pills taken each day, and long term health. A third of participants in Australia (31%) reported side effects from HIV medication. The highest was Mexico at 75%. About two thirds of all participants worried about long-term effects of HIV treatments, including 63% in Australia. The highest level of concern was in Argentina (88%).
Australia leads the world in some respects. People with HIV in Australia feel comfortable talking to their doctor about side effects (81%) and HIV treatments (93%). Three quarters said their doctor asks for their views before prescribing HIV treatments (76%).
Agreeing on a treatment plan
To improve person-centred care, the research suggests a treatment plan should be created. It should be evaluated regularly, even when you are happy with your medication. This can happen through a regular conversation with your HIV care provider. It should address your concerns about long term effects of treatment, such as liver, kidney and bone health.
The research found communication between doctors and patients can be improved. In particular, participants felt they were taking up too much of their doctors’ time. There may not be enough time in appointments to discuss patient concerns.
What are the next steps?
The research helps us understand the needs and preferences of people with HIV in Australia and around the world. This can help us improve person-centred care and quality of life for people with HIV.
Many studies report people with HIV have lower quality of life. This includes having more age-related illness earlier in life. This can mean taking other medications in addition to HIV treatment. This can lead to ‘polypharmacy,’ or taking more than five pills daily.
To achieve good quality of life for all people with HIV, treatment and care must be holistic. This means care providers consider both physical and mental health concerns. They offer solutions, which may include new treatment options. They engage people with HIV in shared decision-making about their care.
Limitations to keep in mind
Only fourteen Australian women participated in the survey. We need to look at other research and resources to understand the experiences of positive women.
Similarly, the survey did not ask about the race/ethnicity of participants. Indigenous and culturally diverse people may have worse experiences of HIV treatment and care.
Survey participants were drawn from people already engaged with PLHIV organisations. They are likely to be doing better than people who are not connected with care and support.
These limitations are not reasons to dismiss the research findings. If anything, they underscore the need for improvements in patient-centred care.