Symptoms still common in people with HIV, but rarely recognised by their doctors

Michael Carter
Published: 07 June 2010

HIV-positive patients have a high burden of symptoms, which are often unrecognised by their healthcare providers, US investigators report in the online edition of AIDS and Behavior.

The researchers found that nine symptoms were associated with health outcomes, but that “providers consistently under recognised all of these”.

Patients with HIV can experience a wide range of symptoms. These can have a number of causes, such as HIV itself, the infections to which people with HIV can be vulnerable, or the side-effects of treatment. Symptoms need to be taken seriously, as they can not only be a warning of serious health problems, but also because they reduce quality of life, and have been associated with poorer adherence to HIV treatment.

Despite their importance, research has consistently shown that symptoms are under-recognised by healthcare providers. This means that, in many cases, appropriate treatment to alleviate symptoms is often not provided.

To gain a better understanding of HIV-positive patients’ experiences of symptoms, a team of US investigators designed a cross-sectional study. This involved 751 patients enrolled in the Veterans Aging Cohort Study (VACS).

Between 1999 and 2000, the patients completed a questionnaire asking about the presence and severity of 20 different symptoms.

On the same day, the patients’ healthcare providers completed an identical questionnaire, reporting if their patient had presented with any of the listed symptoms in the previous four weeks.

In addition, the patients completed a second questionnaire enquiring about their health-related quality of life.

An analysis was conducted by the investigators to see if any symptoms were associated with health outcomes, especially hospitalisation and mortality.

To ensure that they took into consideration any confounding factors, the investigators gathered information on the patients’ demographics, use of antiretroviral therapy, CD4 cell count and viral load.

Most of the patients were non-white (54% Black, 12% Hispanic). Their mean age was 49, and 41% were aged over 50. Almost two-thirds of patients had a psychiatric illness. HIV treatment was being taken by 87% of patients, with mean CD4 cell count being 331 cells/mm3 and mean viral load 715 copies/ml.

There was a high prevalence of symptoms. Each of the 20 symptoms listed in the questionnaire was reported by a third or more of patients.

Fatigue was reported by 71% of patients, with difficulty sleeping, depression, muscle aches, and diarrhoea each reported by 60%. Other commonly reported symptoms were headache, difficulty remembering, tingling hands or feet, weight loss, and change in body shape, each being present in 50% or more of patients.

Overall, nine symptoms were significantly associated with outcomes.

Fatigue, trouble remembering, cough, aches and pains, loss of appetite or difficulty eating, and changes in body shape were all associated with poorer quality of life.

Weight loss was associated with an increased risk of hospitalisation (hazard ratio [HR] = 1.37; 95% CI, 1.10 to 1.70).

However, the presence of some symptoms was associated with positive health outcomes.

Anxiety and hair loss were both associated with a reduced risk of hospitalisation, and patients who reported diarrhoea were significantly less likely to die (HR = 0.71; 95% CI, 0.51 to 0.98). The investigators believe that this is because these symptoms were the side-effects of antiretroviral drugs.

The importance of taking these symptoms seriously is stressed by the investigators. They write, “these symptoms may subsequently lead to poorer adherence as the patient tires of the side effects. In an era when patients live on combination antiretroviral therapy for decades and experience multiple comorbidities, this becomes essential.”

Healthcare providers rarely recognised that their patients were experiencing symptoms. The concordance of answers provided by patients and those caring for them was poor.

“Providers consistently under recognize patient symptoms,” comment the investigators, “future work will seek to understand this … identify major contributing causes of the symptoms and the most efficient treatments to operationalize tools to improve patient-centered care.”


Edelman EJ et al. Patient and provider-reported symptoms in the post-cART era. AIDS Behav, online edition: DOI 10. 1007/s10461-010-9706-z, 2010.

Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.