Social problems and drug and alcohol problems common among people who develop AIDS despite long-term HIV care

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Psychiatric, drug, alcohol and social care problems are highly prevalent among people who develop serious AIDS-defining illnesses well after their diagnosis with HIV, UK research published in Sexually Transmitted Infections shows. The retrospective study involved people who received care at the Chelsea and Westminster Hospital, London, between 2005 and 2010. An extremely large proportion of the people who developed AIDS despite being established in care were lost to follow-up for a protracted period after their diagnosis and discontinued antiretroviral therapy.

“Non-attendance and non-compliance in HIV care remain challenges that must be addressed by clinicians to prevent avoidable mortality,” write the authors.

Thanks to antiretroviral therapy, the prognosis of most people living with HIV in the UK is excellent. However, cases of AIDS still occur. People who develop an AIDS-defining condition fall into two broad categories. The first comprises people who are diagnosed late (with a low CD4 count) and have an AIDS-defining illness at the time of their HIV diagnosis. The second group involves people who are known to be HIV positive but who nevertheless experience disease progression despite medical follow-up. The authors described this second category of people as post-HIV diagnosis AIDS patients (PHDA).


AIDS defining condition

Any HIV-related illness included in the list of diagnostic criteria for AIDS, which in the presence of HIV infection result in an AIDS diagnosis. They include opportunistic infections and cancers that are life-threatening in a person with HIV.

loss to follow up

In a research study, participants who drop out before the end of the study. In routine clinical care, patients who do not attend medical appointments and who cannot be contacted.

opportunistic infection (OI)

An infection that occurs more frequently or is more severe in people with weakened immune systems, such as people with low CD4 counts, than in people with healthy immune systems. Opportunistic infections common in people with advanced HIV disease include Pneumocystis jiroveci pneumonia; Kaposi sarcoma; cryptosporidiosis; histoplasmosis; other parasitic, viral, and fungal infections; and some types of cancer. 


An alternative term for ‘adherence’.

retrospective study

A type of longitudinal study in which information is collected on what has previously happened to people - for example, by reviewing their medical notes or by interviewing them about past events. 

Little is known about the characteristics of people in this PHDA group.

Investigators therefore searched the medical records of the 6000 people who received care at the Chelsea and Westminster Hospital during the study period and identified people who developed severe AIDS-defining opportunistic infections: cryptococcal meningitis, cerebral toxoplasmosis or Pneumocystis jirovecii pneumonia (PCP).

A total of 101 people met the authors’ inclusion criteria. There were 54 PHDA patients (53%) and 47 late presenters (47%).

There were significant demographic differences between these two groups.

PHDA patients were more likely to be migrants or visitors than late presenters (54 vs 34%, p = 0.047). A higher proportion of PHDA patients were injecting drug users compared to the late presenters (9 vs 0%, p = 0.032).

The median period between diagnosis with HIV and development of a serious opportunistic infection among the PHDA patients was seven years (range 4 to 13 years).

Prior to admission with the opportunistic infection, the PHDA patients had more psychiatric co-morbidities than the late presenters (35 vs 13%, p = 0.009) and were also more likely to report problematic use of alcohol (24 vs 4%, p = 0.005), problematic substance use (22 vs 2%, p = 0.003) and social care problems (25 vs 0%).

“This cohort has potentially modifiable risk factors contributing to their disease progression,” note the authors.

Approximately 90% of PHDA patients were lost to follow-up for at least one period of four months or longer after their diagnosis. The median duration of absence from care was eleven months. Common reasons for dropping out of care were travel abroad (13%), social care issues (13%), moving care to another centre (7%), treatment avoidance (6%) and religious issues (4%).

“For patients with extended LTFU [lost to follow-up] periods, assertive outreach should be established to engage these individuals with care,” urge the investigators.

Almost two-thirds (63%) of PHDA patients had previously taken HIV therapy, and the median duration of this treatment was 48 months. But 20 people (59%) discontinued their treatment. The median duration of each treatment break was twelve months. Reasons for stopping therapy were side-effects (27%), lifestyle issues (12%), religious views (9%), travel abroad (6%), social issues (6%), negative views about HIV therapy (6%) and a belief in alternative remedies (3%).

“PHDA patients are a distinct subgroup from late presenters,” the authors conclude. “Many default from clinical care and have poor ART compliance.”


Lee MJ et al. Comparison of two cohorts of patients presenting with AIDS: patients with previously known HIV diagnoses and true late presenters. Sex Transm Infect, online edition, doi: 10.1136/sextrans-2012-050966, 2013.