Symptoms still common in patients with HIV, and associated with poor adherence and risky sex

Physical and psychological symptoms are highly prevalent in HIV-positive patients, investigators from the UK report in the online edition of Sexually Transmitted Infections.

Unprotected sex with a partner of an unknown or different HIV status and poor adherence to HIV treatment were both associated with a high burden of psychological symptoms.

“The patient burden of disease remains high, and outcomes are unlikely to be improved without careful attention to the patient experience of disease and a clinical focus beyond virology”, comment the investigators.

From the time of seroconversion, HIV infection is associated with a high prevalence of distressing symptoms. The World Health Organization recommends that interventions to control pain and symptoms should be an essential part of HIV care.

However, research suggests that physicians often fail to detect symptoms in their patients, and that many individuals with HIV are living with untreated pain and other symptoms.

Investigators in London and south-east England were concerned about this lack of attention to symptoms. They also wished to see how prevalent symptoms were in their patients and if experiencing symptoms was associated with adherence to HIV treatment, unprotected sex, and disclosure of HIV status to sex partners.

Therefore, in 2005-06 a total of 778 patients took part in a cross-sectional study.

Study participants were asked to provide demographic information and to say if they had experienced any of 26 physical or psychological symptoms in the past seven days. The distress caused by symptoms was scored on a scale of 0-4.

Information was also sought on the use of antiretroviral therapy. Those taking HIV treatment were asked to report their level of adherence in the previous week. All individuals were asked if they had had unprotected sex with a partner who was HIV-negative or of unknown status in the previous three months and if they disclosed their HIV status to partners.

Most (66%) of the participants were gay or bisexual men and were white (67%). The mean age was 40 years. A little over half (51%) of patients were born in the UK, and 45% had a degree.

Over two-thirds (67%) of patients were taking HIV therapy. Complete adherence to treatment was reported by 42%; partial adherence by 36%; and poor adherence by 22%. A third of patients taking treatment had switched therapy once and 40% reported multiple treatment changes.

A total of 11% of patients reported unprotected sex in the previous three months with a partner who may have been HIV-negative, and 6% had never disclosed to a sex partner

Symptoms were highly prevalent. The mean number of reported symptoms was 18. The mean symptom physical distress score was 0.81, the mean psychological distress score was 1.34, and the global distress score was 1.16.

Lack of energy was reported by 71% of patients, tiredness by 68%, difficulty sleeping by 62%, poor concentration by 61%, worry by 70%, sadness by 66%, diarrhoea by 54% and sexual problems by 53%.

Possession of a degree was associated with less symptom-related physical (p = 0.004), emotional (p = 0.007) and overall (p = 0.021) distress.

In addition, white patients reported less symptom related distress (p = 0.04) than those of other ethnicities. The investigators think that this could be because many black African patients in the UK are diagnosed late when they are ill because of HIV and therefore likely to be experiencing symptoms.

Disclosure of HIV was significantly associated with fewer symptoms (p = 0.021), and reporting unprotected sex with a partner who may have been HIV-negative was associated with a greater number of psychological symptoms (p = 0.047).

“Interestingly”, write the investigators, “currently being on antiretroviral therapy was not significantly associated with any of the symptom measures.”

Analysis was then restricted to the patients who were taking HIV treatment. Poor adherence was significantly associated with psychological (p = 0.001) and global distress (p = 0.006). Switching treatment was associated with both physical (p = 0.003) and psychological distress (p = 0.006) caused by symptoms, as well as a greater number of total symptoms (p = 0.013).

Being born in the UK and having a degree were both associated with a lower burden of physical symptoms.

“The data…reveal high 7-day prevalence and associated distress of burdensome symptoms”, comment the investigators, who conclude: “It is essential that quality management of HIV disease routinely assess these distressing problems, so that key outcomes of risk behaviour and adherence may be optimally influenced.”