Pain highly prevalent among people with HIV and has a major impact on mental health, quality of life, employment and use of healthcare

Pain is very common among people living with HIV (PLWH) and has a major impact on quality of life and use of healthcare resources, investigators from the UK and Ireland report in the online edition of AIDS. Prevalence of pain was significantly higher among older HIV-positive adults compared to younger PLWH and older HIV-negative controls.

“Despite the use of more modern ART [antiretroviral therapy] regimens, older PLWH continue to experience higher rates of pain than similarly-aged HIV-negative participants,” comment the authors. “Pain was associated with lower employment rates and with high levels of healthcare resource use. Among the two groups of PLWH, current pain was associated with higher depressive symptoms, poorer quality of life and poorer functional status, regardless of age.”

Little is known about the prevalence and implication of pain among people taking modern ART. To address this research gap, investigators from the POPPY study therefore designed an observational, cross-sectional study involving three groups of people: older (over 50 years) PLWH; younger (below 50 years) PLWH; and older HIV-negative controls. The HIV-negative control group were mostly recruited at sexual health clinics and community settings in order to provide a comparable group to the older group of PLWH. They were matched in terms of age, ethnicity, sexual orientation and geographical location.

Participants were recruited at seven sites across the UK and Ireland between 2013 and 2016. Using self-completed questionnaires, participants were asked if they currently had aches or pains that had lasted a day or more, or had done so in the previous month. To assess the impact of pain, information was also gathered on self-reported quality of life, prevalence of depressive symptoms, employment status and time taken off work or study and use of healthcare resources, for example GP visits.

The study population consisted of 676 older PLWH, 357 younger PLWH and 295 older controls. Almost all the HIV-positive participants (98%) were taking ART. Viral load was undetectable in 90% of PLWH and median CD4 cell count was 626 cells/mm³.

Current pain was reported by 44% of participants. Prevalence of current pain was significantly higher (p = 0.007) among older HIV-positive people (49%) compared to younger PLWH (38%) and older HIV-negative participants (40%). The investigators calculated that, compared to older HIV-positive people, the other two study groups were about a third less likely to report current pain.

Overall, two-thirds of participants reported experiencing pain in the previous month. Once again, prevalence was significantly higher (p = 0.03) among older PLWH (70%) compared to younger PWHIV (63%) and the HIV-negative controls (64%). Younger PLWH and the HIV-negative controls were between 28 and 26% less likely to report pain in the previous month compared to older PLWH.

Those reporting current pain and pain within the past month were more likely to be female, heterosexual and of Black African ethnicity. 

Several findings suggested that pain had a major impact on wellbeing, quality of life and use of healthcare resources.

Approximately 14% of individuals reporting pain said they had missed days of work or study due to pain. This included 19% of older PLWH, 12% of younger PLWH and 8% of HIV-negative controls. Approximately a third of participants reporting current pain were unemployed or on sick leave, twice the rate observed in individuals who said they were not currently in pain.

In all, 59% of individuals with pain said they had consulted a doctor because of this. This included approximately two-thirds of older HIV-positive and HIV-negative individuals and half the younger PLWH.

Sixty per cent of older PLWH who had current pain reported depression, significantly higher than the 37% prevalence seen in PLWH who did not report pain. Almost all quality-of-life measures were poorer in PLWH experiencing current pain.

“Our study confirms that even in the era of effective ART, and in individuals with largely controlled HIV infection, pain remains common among PLWH with major impact on quality-of-life and associated healthcare and societal costs,” conclude the authors. “Interventions are required to assist clinicians to proactively manage pain in their patients, and to assist PLWH to communicate their pain to clinicians and to self-manage pain and related symptoms.”