BASELINE’s Patient Involvement Survey


If you are living with HIV, the chances are you are going to be surveyed quite regularly over the next few years. HIV clinics are likely to want to assess your satisfaction with the services they provide you; it’s an auditable target laid out in the British HIV Association’s new Standards of Care for People Living with HIV.

As BASELINE went to press, Sigma Research released the findings of its survey My Care, I Care, which evaluated what people with HIV value about NHS HIV services in London. It’s a mammoth project and we’ll be reporting the key findings in the next issue. 

At the end of February 2013, in the run up to the monumental changes that occurred in the NHS on April 1, BASELINE ran a survey for people living with HIV, currently taking antiretroviral therapy to take a snapshot of how involved people are in their care and look at the impact treatments have on people’s day-to-day lives.  The survey was supported by pharmaceutical company MSD and market research company Kantar Health UK who helped us refine our questions, hosted the survey and provided us with a vast array of excel spreadsheets of the data. MSD covered the costs of the survey and had a chance to review the questions.  

An early analysis of the survey was presented at this year’s British HIV Association Conference in Manchester in April. The survey ran for 8 weeks. 

With any internet-based survey, it’s important to reflect on the limitations; the respondents are people with access to the internet, people who are interested enough in HIV to read BASELINE and whose English was good enough to understand the questions. As such they can’t be considered representative of everyone living with HIV in the UK. The response rate among women was low, despite the survey being promoted across women with HIV networks. 

That said, some of the issues raised around the way HIV impacts upon your personal, sexual and work life have been raised in other surveys such as Sigma Research’s What Do You Need? The continuing role side effects play was highlighted in NAM’s 2009 Treatment Survey, making us more confident that our final results reflect the experiences of the HIV population at large. 

Who completed the survey?

Thank you to the 267 of you who completed the online questionnaire. Similar to many other surveys, almost three quarters (74%) of respondents were male, one quarter were female and 1% transgender. 

Two thirds (64%) of respondents said they were gay, one quarter (27%) were heterosexual and 7% bisexual. 

In terms of ethnicity, the survey had a truly global representation; reflecting, perhaps, the diversity of the UK’s epidemic. Two thirds (67%) were white British, 13% were black African, while 6% defined themselves as European. Singular respondents came from places as far flung as Laos and the Middle East.

How old were they?

The largest proportion of respondents (49%) was aged 36-50 (a similar proportion in this age group are currently receiving HIV treatment in the UK). One third (35%) of respondents were aged 51 or older but only 15% were under 35 years of age. 

Where they received their care?

33% of respondents were receiving HIV care in London; to put this in context, in 2011, 42% of people living with HIV received their care in the capital. In addition 17% of respondents received their care in the West Midlands (where we are based) and 13% in the North West, and 6% of respondents in Scotland; (5% of positive people in the UK are currently receiving their care in Scotland). We were very happy with the geographical mix of respondents. 

54% of respondents were in some form of work, 19% reported being unable to work and 10% were registered to receive state benefits. 

 20% of all respondents live on £30,000 or more   (the average UK full time wage is £26,664) while 29% live on less than £10,000 per year. 

As you can see, three quarters of respondents had been diagnosed 5 years or more, with more than half of all respondents (57%) having taken therapy for 5 years or more.  One in ten respondents had taken antiretroviral therapy (ART) for less than 12 months. 

The overwhelming majority of respondents (96%) know the names of their HIV medicines. 

What role do ART side effects play?

So what about those all-important side effects? How common are they and, if so, do they have a significant impact on quality of life? Somewhat reassuringly there are some people who said they had not experienced any side effects, but this was around one in 20 of those surveyed (6%). 

‘More than a quarter of people (28%) said they will wait until side effects are limiting or unbearable before raising it with their clinician.’

It’s clear from the survey that side effects remain a critical concern for people living with HIV. Side effects are a key reason people switch ART. And for 38% of people in the survey, a combination with minimal side effects was deemed the most important issue when choosing ART. One quarter (24%) were concerned that their medication had minimal long-term impact on their body. Somewhat surprisingly only 17% of people felt that the possibility to take medicine once a day was the most important issue. 

Which ART side effects are most common?

Almost two thirds of people (61%) report sleeping disorders, just over half (52%) reported fatigue or anaemia, 49% reported gastro-intestinal side effects, 48% reported depression and 35% reported anxiety. 

In total 42% had raised the issue of side effects with their clinician in the past 12 months but in half of cases (54%) the treatment was not changed. 

What really surprised us is that slightly more than a quarter of people (28%) said they will wait until side effects are limiting or unbearable before raising it with their clinician. We don’t believe anyone should put up with ongoing side effects from medication, if an alternative option is available, but understand that it can be difficult for some people to have the confidence to raise issues such as this with the clinic. 

How do ART side effects impact someone’s life?

We asked respondents to rate how side effects impacted upon various aspects of their life; rating from not at all to completely. 

40% of respondents said that the medicines they take majorly or completely impact upon their sex life, while work and personal life is impacted to the same extent for around one in three (31% and 29% respectively). Social life is impacted by the same extent for nearly a quarter of respondents (24%). Around 10% said there was no impact on these various areas of life. But remember 6% reported they have not experienced any drug side effects.

Management of specific side effects

We asked people how specific side effects; namely low bone density, blood fat problems and depression had been managed. We did this because we believe that, increasingly, these issues may be managed by GPs. 

Let’s take blood fats first; we found that 30% of respondents who had experienced blood fat elevations had been referred to a GP, 16% had changed their HIV medication and 55% had been prescribed a medication such as a statin. A smaller proportion of people diagnosed with depression were prescribed an antidepressant (22%), while 16% changed their HIV medicines due to it and 27% were referred for counseling. One in three people (30%) were referred to another specialist after developing reduced bone mineral density, with only one in five (18%) being referred to a GP. 

Missed ART doses

Overall 34% of respondents had missed a dose in the past month. Women were more likely to report a missed dose (42%) than men (31%). The major reason for missing a dose (for 59% of respondents) was simply forgetting, for one in five (20%) it was being away from home or side effects of medication (19%).

ART breaks

One in five people (19%) reported ever having taken a treatment interruption. Of those, a quarter (27%) remained off treatment for one year or more with the support of their nurse or doctor, while over half of people (54%) had stopped their break and were back on treatment within 13 weeks. 

Switching ART

Approximately one in three people (29%) had switched therapy in the past 12 months. There were some regional variations; 38% of people living receiving care in the South East had switched therapy in the past 12 months compared with 22% of people in London. In 95% of people the switch was made in partnership with their clinician. 


Involvement means different things to different people, but to us it means to be engaged and active in your care. We think someone who is engaged listens, responds, thinks for themselves asks questions and responds to new information. We all have the right to set the level of involvement that’s appropriate for us, but involvement requires a certain level confidence and we believe peer support is a useful tool to ensure you are able to engage to the fullest in your healthcare.

‘Three quarters of respondents (72%) report being involved ‘completely’ or ‘to a major extent’ in the management of their HIV.’

Patient Involvement: in the selection of the initial ART combination 

In total 27% of women and 20% of men reported excellent involvement in the selection of their initial ART regimen. In total 29% felt their involvement had been poor; 49% of respondents from the North West felt their involvement at this critical point had been poor, compared with 19% of respondents from London. 

How involved do people feel in their care?

Overall three quarters of respondents (72%) report being involved ‘completely’ or ‘to a major extent’ in the management of their HIV. One in ten (9%) report very little involvement. We found 39% of men reported complete involvement, and 28% of female respondents. A higher proportion of gay men (42%) reported complete involvement, compared with 26% of heterosexuals. In total 80% of Brighton respondents reported complete involvement in their care, compared with 20% from the West Midlands.

Who wants more involvement?

One third (34%) of respondents said they wanted more involvement in their care, while 64% said they wanted the same. Regionally half of patients (51%) in the West Midlands said they wanted more involvement in their care, compared with 14% in the North East. We found a higher proportion of women (46%) than men (30%) wanted more involvement in their care. 

And in the clinic?

Half of respondents (47%) felt they had an excellent relationship with their clinic and a similar proportion (45%) reported being excellently prepared for their clinical appointment. Two thirds (64%) reported their experience of their doctor’s non-judgmental attitude to them as excellent  but one in ten (11%) felt their doctor’s ability to explain the importance of adherence was poor or fair, and the same proportion of respondents (11%) felt their doctor’s explanation of side effects had been poor.


We weren’t surprised to find such high levels of involvement among the people living with HIV who responded to the survey. We think there is a great opportunity for clinics to work with voluntary sector organisations to provide opportunities for engagement for the people who want it. We believe opportunities always exist to raise the bar, making people better engaged and more satisfied with their care. We look forward to seeing the results of the upcoming surveys and see how the findings compare with our own. 

We’d like to thank the respondents, the people who helped publicise the survey, MSD for sponsorship and Kantar Health UK for help developing the survey. A more detailed analysis of the survey will be available on our website this month. 

The survey was supported by pharmaceutical company MSD and market research company Kantar Health UK who helped us refine our questions, hosted the survey and provided us with a vast array of excel spreadsheets of the data. MSD covered the costs of the survey and had a chance to review the questions.