Looking Back to Look Forward: HIV Futures Trend Data
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Rachel Koelmeyer (ARCSHS Research Officer), presents data from the HIV Futures studies, looking at changes that have occurred over time in the experience of living with HIV in Australia. She also briefly describes the Tracking changes and Lifetimes studies, the findings of which may be useful to consider in service planning This presentation was given at the AFAO Positive Services Forum 2012.
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Looking Back to Look Forward: HIV Futures Trend Data
- 1. Making Positive Lives Count Looking Back to Look Forward: HIV Futures Trend Data 20 March 2012 Rachel Koelmeyer, Jeffrey Grierson and Marian Pitts Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne, VIC, Australia Melbourne, Australia
- 2. Today’s Presentation • HIV Futures Data – Changes over time • Other Living with HIV Projects – Tracking Changes study – Lifetimes study
- 4. HIV Futures Surveys • National, cross-sectional surveys of PLHIV • Sample weighted against national surveillance data Futures Futures Futures Futures Futures Futures 1 2 3 4 5 6 Year(s) 1997 1999 2001 2003 2005/6 2008/9 Sample Size 925 924 898 1059 973 1106 Proportion of estimated 8.0 8.0 6.0 8.1 6.4 6.6 population (%) • Full reports available at: www.latrobe.edu.au/hiv-futures
- 6. Difficulties using ARV (%)
- 7. Do ARVs mean better prospects?
- 9. Using Medication for Mental Health Condition (%)
- 11. Poverty
- 13. Discrimination – ever experienced
- 14. Other Living with HIV Projects
- 15. Tracking Changes • Aim: To investigate treatment decision-making in the recent post-HAART era in Australia • Method: – Online survey of PLHIV (n=254) – Interviews with HIV S100 prescribers (n=18) – Data collection: Nov 2010 – Mar 2011 • Key findings: – Patient-centred decision making – Psychosocial barriers to commencing/switching HAART regimens – Importance of doctor-patient relationship to PLHIV • Report available: www.latrobe.edu.au/arcshs/
- 16. Anthony Lyons, Marian Pitts, Jeffrey Grierson National longitudinal online survey (ARCSHS and NAPWA) Compares HIV-positive and HIV-negative gay men aged 40 years over Physical health, mental health, sex, and relationships Wave 1: November, 2010 – April, 2011 1,233 gay men (202 HIV+; 904 HIV-) aged 40 to 78 Wave 2: November, 2011 – April, 2012 So far we have a 48% follow-up rate Outcomes so far: HIV+ men aging well in most domains relative to HIV- men But poorer mental health outcomes: 37% of HIV+ men reported treatment for a mental health problem compared with 25% of HIV- men Contact: Dr. Anthony Lyons at ARCSHS, a.lyons@latrobe.edu.au
- 17. Summary: Areas for Future Work? • Address psychosocial barriers to taking ARV • Management of comorbidities • Employment / financial position of PLHIV • Addressing ongoing unwanted disclosure and discrimination, especially in relation to health services and work • Supporting PLHIV to establish and maintain fulfilling relationships
Editor's Notes
- Thank you for inviting me to present/introduction
- In today’s presentation, I will be presenting: Some data from the HIV Futures studies, looking at changes that have occurred over time in the experience of living with HIV in Australia and areas where improvements are still needed I will also briefly describe a couple of other ARCSHS research projects, the findings of which may be useful to consider in service planning
- To start off, some data from the HIV Futures studies . . .
- For those of you who don’t know much about the HIV Futures studies . . . The HIV Futures studies to date include 6 national cross-sectional surveys of PLHIV in Australia. The surveys have been conducted every 2-3 years since the mid-1990s to provide information about the clinical and social aspects of living with HIV in Australia. Data collection for the 7 th survey is currently underway. A number of survey items have been retained across the surveys to allow comparisons over time. In today’s presentation, I will be presenting data about changes over time in some key aspects of living with HIV. For anyone who would like further informatiion about the findings of any of these studies, the full report from each study, can be downloaded from the HIV Futures website.
- Over time, we have seen a slight decrease followed by an upswing in the proportion of PLHIV who report currently using ARV. Based on data from the HIV Futures 6 study, around 80% of PLHIV currently reporting using ARV in 2008/9. Over time, we have also observed increases in the proportion of PLHIV who report having an undetectable viral load or a CD4 count above 500 cells/uL.
- Pleasingly, we have also observed a large reduction in the proportion of PLHIV who report difficulty taking ARV over time. A reduction in difficulty was observed across a number of aspects of taking antiretroviral medication, including pill burden and side effects to name just a few.
- We have also observed an increase in optimism among PLHIV in terms of their prospects, thanks to the availability of effective ARV treatments.
- Despite these positive improvements, other aspects of living with HIV have not improved to a similar degree. Over time, despite improvements in HIV-related health thanks to antiretroviral treatment, we have seen little change in the proportion of PLHIV who report their physical health as good or excellent. This may be due to a number of factors, such as other comorbidities and the side effects of antiretroviral treatments. Social factors may also play a role.
- Over time, we have observed a significant burden of mental health conditions among PLHIV. Over time, a similar proportion of respondents have reported recent use of medications for depression, anxiety and other mental health conditions, representing around 40% of the PLHIV on each occasion. Note: Medication data not collected in the Futures 1 survey.
- While we have observed an increase in the proportion of PLHIV who report being in full-time employment over time, in 2008/9 only around 55% of PLHIV reported being in paid employment – there is still room for further improvement here. (Proportion of working age pop’n in employment HF6: 57.8%)
- Similarly, we have seen little change in the proportion of PLHIV living below the poverty line over time. Around 1/3 of PLHIV continue to experience poverty.
- Over time we have also observed a reduction in the proportion of PLHIV who report having sex in the last 6 months: an increasing proportion over time report have no sexual activity in the last 6 months, which appears to be due to a reduction in sexual activity in the context of a regular relationship. We are uncertain of the explanation for this. Possible explanations which have been raised to date include a reduction in sexual activity with age and a loss of libido as a side effect of medication use.
- A proportion of PLHIV continue to experience discrimination in relation to their HIV status. Around 40% of PLHIV overall report experiencing a form of HIV-related discrimination at some point. In terms of recent discrimination, within the last 2 years, in 2009, 10% of PLHIV reported experiencing HIV-related discriminationat health services, 5.2% in the workplace and 2.7% in relation to their accommodation. HIV-related discrimination may even be an area of greater concern in the future as hopefully a greater number of PLHIV participate in the workforce and as PLHIV age with HIV, and potentially have increasing need to utilise main-stream health services.
- Before I summarise the data presented, I’d just like to give you all a brief overview of a couple of other projects in our Living with HIV program, which may be useful for service planning . ..
- The Tracking Changes study was conducted between November 2010 and March 2011 to gather further information about the process of commencing and switching antiretroviral treatment, 15 years on from the introduction of HAART, in an environment in which a number of effective ARV regimens of increasing tolerability were available. The data collection involved an online survey of PLHIV and structured telephone-based interviews with HIV S100 prescribing general practitioners. The key findings from the study were that The processes of commencing and switching ARV were found to be very patient-centred, with doctors keen to involve patients in the decision-making process and allow a long lead-time for patients to prepare themselves. PLHIV also report their doctors to be an important source of information about ARV and HIV, and the social aspects of the clincial encounter were rated highly by PLHIV. Of most importance for service planning, psychosocial factors were found to be the key barriers to commencing and switching ARV for PLHIV (elaborate on this). For anyone interested in the finding of this study, the full report from the study is available online on the ARCSHS website.
- In summary, based on the data presented today . . . Here is some food for thought about what I see as the key areas for future work