Three-quarters of people with HIV report poor mental or physical health

HIV-positive people experience a similar number and range of physical and psychological symptoms to patients with advanced cancer, the Eighth AIDS Impact Conference was told last week in Marseilles, France.

Professor Richard Harding of King’s College, London, told the conference that reported psychological ill-health was associated with poor adherence to treatment and also to having unprotected sex with partners of unknown HIV status.

Many symptoms experienced by people with HIV went unreported because, he said, “Clinical encounters with HIV-positive patients concentrate on their CD4 count and viral load.”

In this respect HIV was no different from other chronic conditions, he added. For instance research with cancer patients showed that when they were asked in detail about their health, two-thirds of the symptoms they experienced went unreported and unrecognised by their doctors (Justice 2001).

Harding and colleagues conducted two studies. In one, he interviewed 904 patients attending five HIV clinics in London and Brighton in conjunction with Lorraine Sherr of London’s Royal Free hospital. In the second, he interviewed 347 gay men with HIV in conjunction with Tim Molloy of the HIV prevention charity GMFA.

As well as personal and health details, respondents in the both studies were given a questionnaire called the Memorial Symptom Assessment Scale Short Form (MSAS-SF), which asks patients if they have, in the past week, experienced 22 commonly encountered physical or psychological symptoms and asks them to rate their severity. It uses layman’s rather than clinical language to described these symptoms (‘feeling sad,’ ‘worrying’, ‘in pain’ and so on).

People in the first study were also asked about their adherence to HIV therapy and to safer sex. The men in the second study, guided by answers elicited in a pre-study focus group, were asked about many different aspects of living with HIV, including sexual health, how they thought HIV would affect their health, employment and benefits, disclosure, stigma and discrimination, and relationships.

Of the 904 clinic patients, two-thirds were gay men, a quarter heterosexual women and one-tenth heterosexual men. Four out of five patients were taking HIV treatment.

Of the GMFA study respondents, nearly 60% (57.7%) were taking HIV treatment. Virtually all of those had an undetectable HIV viral load, as did a few patients not on treatment. Their mean age was 37.5 and 45% were London residents. All but 13 (94%) were Caucasian and just under a quarter had been diagnosed with HIV before 1996. Just over 50% were employed. One-third reported having had unprotected sex with a partner of unknown HIV status in the last six months.

One of the remarkable (and consistent) findings of both studies was the high rates of symptoms of ill-health reported by the study subjects. These may best be compared in a table (only symptoms Harding reported for both studies are included here):

Harding commented that both the prevalence and the self-rated severity of these symptoms were comparable to findings from a study of patients with advanced cancer (Solano), and that studies he had recently conducted in South Africa and Australia found similar figures.

In a multivariate analysis of the clinic study, gender, sexuality, ethnicity and nationality were associated with neither physical nor psychological symptoms. The only significant predictors of an increased burden of physical symptoms were a lower standard of education (p= 0.001) and, not surprisingly, having switched regimens.

These factors were also significantly associated with psychological symptoms, but in addition so were poor adherence (p = 0.001) and having had unprotected sex with partners of unknown HIV status (p = 0.02). Being on HIV treatment was associated with better psychological health.

The GMFA study asked broader questions about treatment and health optimism, the respondents’ current job and financial status, future life plans, and what their own expectations of their future health were. It used a 12-strong pre-study focus group to guide which questions to ask the larger group what they felt would support them to maintain good mental and physical health.

Harding told the conference that a number of themes emerged from the focus group:

• Less exclusive focus in healthcare appointments on CD4 and viral load and more on treatment side effects and mental well-being.
• More guidance on maintaining general health.
• To quote a respondent: “A sympathetic partner who isn’t scared of having a positive boyfriend”.
• Advice on rebuilding careers.
• Another quote: “Employment outside the HIV field”.
• More emphasis and publicity about combating anti-HIV stigma and discrimination.

When it came to asking the larger study group quantifiable questions about their health beliefs, there was no evidence of what has been called ‘treatment optimism’ or complacency.

Nearly three-quarters of respondents (72%) felt HIV would reduce their life expectancy, and being on treatment did not improve optimism. Fifty-eight per cent felt having HIV had reduced their career options. Eighty-five per cent believed superinfection with another strain of HIV was possible and 54% felt it was important to protect themselves from further infections. Three-quarters felt that avoiding other sexually transmitted infections was important.

“Messages from clinicians that patients can now expect to have a ‘near-normal life expectancy’ are not reflected in our respondents,” Harding commented.

He called for improved integration of clinical and mental health services for patients; more help with welfare rights, finance and employment; further investigation into the drivers of sexual risk-taking; and a commitment of everyone working with HIV to support anti-discrimination measures.