The UK Foundation for AIDS Research conducted an anonymous survey of HIV positive people in the UK during 2010/11. The survey was publicised online and via community groups. The majority of responses were gathered via the website (20 responses were completed offline). Whilst respondents were self-selecting and the results not scientifically analysed or weighted, the purpose was to identify issues, especially around quality of life, which warrant further investigation. 589 people took part in the survey, with 402 (68%) completing all 50 questions.
Demographics
As might be expected most respondents lived in Greater London, however all parts of the UK were represented (fig 1). 83% were male, 16% female and 1% transgendered. In terms of age the distribution was as expected and included people from the 15-19 to the 75-79 age groups (fig 2). 77% identified as gay, 18% as straight, 4% bisexual and 1% no sexuality. No one identified as lesbian. Over 80% of the women were heterosexual with 91% of the men being gay. 63% of the women were white, compared with 92% of the men. Overall 76% of people were born in the UK, with 87% being British citizens; 1% were refugees / asylum seekers.
Most respondents were well educated with 70% having been to university, however only 48% were currently in full time employment, with 18% unable to work due to illness. 41% lived alone and 30% lived with their partner or spouse. Income (fig 3) suggests that respondents income is below what might be expected from a comparable group without HIV.
Living with HIV
Most people acquired HIV in the UK (74%), with 5% in Africa. Respondents thought they had acquired HIV via:
- Sex with a man 87.2%
- Sex with a women 3.6%
- Injecting drug use 0.6%
- Contaminated blood 1.9%
Respondents were asked how long they thought they had been living with HIV:
- More than 20 years 13.0%
- 15 to 20 years 13.0%
- 10 to 15 years 13.2%
- 5 to 10 years 28.7%
- Less than 5 years 32.1%
20% of respondents were diagnosed before 1995 with steady increases each year to 2009 (fig 4). Looking at all the responses 25% of people were diagnosed late, with a CD4 count below 200 (fig 5). However when we looked at responses from people who were diagnosed since 2005 this had hardly changed and late diagnoses had actually increased to 26%. In 2008 the Health Protection Agency estimated 32% of adults were diagnosed late, our figures for 2010 were 25%, which suggest that this is still a major issue.
80% of respondents discussed treatment options regularly with their doctor and 60% had changed drugs, either because of side effects (49%), drug resistance (20%) or because better drugs had become available (25%). 20% had taken a treatment break, 5% for over a year. Of those on treatment, the majority (52%) had CD4 counts above 500 (fig 6).
Current Health
23% reported having an illness in the last 12 months due to HIV, with 9% being hospitalised. Respondents were also asked to rate common quality of life issues in order of severity. Obviously some of these conditions will fluctuate over time but it is interesting that fatigue of some sort was rated as an issue by over 80% of respondents, with diarrhoea, night sweats, gastro-intestinal problems, insomnia and sexual dysfunction affecting many. Those on treatment (fig 7) appear to be suffering more than those not on treatment (fig 8). These people are most likely to have been living with HIV the longest however it indicates that, despite succesful ART, people still face many quality of life issues.
High cholesterol was a common treatment side effect, affecting 41% and depression and anxiety affected over half of all respondents.
Adherence
28% of respondents had missed a dose of their medication over the last month (fig 9).
Other issues
The number of people who smoke was much higher that the UK average as was recreational drug use. 9% of respondents stated they injected drugs (fig 10).
However respondents had changed their habits since being diagnosed, although some reported doing more and some less the net change is set out below.
- Exercise +23%
- Smoking -13%
- Alcohol -32%
- Recreational drug use -25%
- Injecting drug use 0%
- Healthy eating +58%
- Casual sex -36%
People stated they were eating healthier, doing more exercise and reducing habits that carry some risk. Although some injecting drug users reported cutting back, this was balanced with others saying they did more resulting in no overall change.
Vitamins and supplements
55% of respondents reported currently taking took some form of vitamin or supplement (fig 11). The most common was a multivitamin, followed by omega 3, zinc, antioxidants and selenium. 44 people listed other supplements including Brazilian mushrooms, seaweed and turmeric.
21% of respondents (who took vitamins) stated that they took vitamins and supplements to increase CD4 counts with 20% taking them to reduce treatment side effects. 48% spent less than £10 a month on vitamins, but 20% spent more than £20 a month with 3% reporting they spent over £60 a month. Only 39% of respondents had fully discussed the use of vitamins and supplements with their doctor or pharmacist. Income didn’t appear to be correlated to use of vitamins and supplements; 67% of those who took vitamins and supplements had an income below £25K, compared with 63% of those who didn’t.
Health and vitamin use
60% of respondents who reported using vitamins and supplements had a CD4 count above 500 (fig 12), compared to 46% of those that reported no use of vitamins, equally fewer people who used vitamins had a CD4 count below 200 (5.9% vs 9.1%). This is only a preliminary findings and whether this is significant or not needs further investigation. Vitamin use did not appear to be affecting other quality of life issues such as fatigue, insomnia, cholesterol, etc. as the results were similar in both groups.
Only 7% of respondents who took supplements had been hospitalised in the last 12 months compared to 13% who reported not taking any supplements, although given the low numbers involved this is not considered significant.
Those who took vitamins and supplements were less likely to take their pills at the right time. 18% of those who reported taking supplements took their pills at the right time each day (over the last month) compared to 27% of those that didn’t take supplements. However people who took supplements were slightly less likely to miss a dose (24% vs 29%).
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- Fig 1, Location
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- Fig 2, Age
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- Fig 3, Income
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- Fig 4 Year of diagnoses
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- Fig 5 – CD4 at diagnoses
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- Fig 6, Current CD4
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- Fig 7, Quality of life issues (on ART)
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- Fig 8, Quality of life issues (not on ART)
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- Fig 9, Adherance
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- Fig 10, Risky behaviour
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- Fig 11, Vitamins and supplements
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- Fig 12, CD4 (on ART) and Vitamin use
These are the preliminary findings; further analysis is being undertaken and the results will be made available when this is complete. The survey also asked people what their research priorities were and these will be published separately.
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[...] people living with HIV will consider taking a multivitamin or supplement at some time. The UKfAR survey found that over half of respondents took some form of supplement, with a multivitamin being most [...]
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[...] people living with HIV will consider taking a multivitamin or supplement at some time. The UKfAR survey found that over half of respondents took some form of supplement, with a multivitamin being most [...]
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Anything that can improve the health & wellbeing of people with HIV should be fully looked into and I would welcome a proper study and anaylasis of vitamins and suppliments. Also I would be happy to take part if any such survey was arranged.