A new set of HIV guidelines urges closer and more personalized monitoring of drug adherence, entry to care, and retention in care.
The 37 recommendations arise from the first effort at synthesizing existing evidence in order to provide clinical guidance for HIV caregivers, according to Melanie Thompson, MD, of the AIDS Research Consortium of Atlanta, and colleagues.
“All of the data have never really been looked at before with an eye toward making recommendations that could be clinically helpful to people,” Thompson told MedPage Today.
A key aspect of the guidelines, appearing online in Annals of Internal Medicine, is an emphasis in individualized care, she said.
“HIV is a complex disease in and of itself, but many people with HIV have complex lives,” she said. Interventions “really have to be personalized, because every patient brings different issues to the table. There really isn’t a one-size-fits-all answer.”
The guidelines were developed by a panel convened by the International Association of Physicians in AIDS Care and were originally intended to deal mainly with questions of adherence to anti-retroviral drugs, Thompson said.
The World Health Organization (WHO) has developed guidance for health care workers on how to support children up to 12 years of age and their caregivers with disclosure of HIV status. Health care workers (HCWs) know that disclosure decisions are complex because of stigma, social support concerns, family relations, parenting skills and concern about children’s emotional and maturational ability to understand and cope with the nature of the illness. HCWs challenged by the complicated issues facing HIV-affected families are often without the support of definitive, evidence-based policies and guidelines on when, how, and under what conditions children should be informed about their own or their caregivers’ HIV status. Consequently, many health care workers around the world are uncertain how to counsel clients about the disclosure process. Thus, they may often miss opportunities to assist parents in dealing with these issues and explaining to parents the need for HIV testing and counselling for all their children. The lack of disclosure ultimately adversely affects the well-being of the child, including access to paediatric HIV treatment and care and adherence to treatment.
This guidance is intended as part of a comprehensive approach to ensuring child wellbeing-that is, the physical, emotional, cognitive and social well-being of the developing child-following the child’s own diagnoses of HIV or that of a parent or close caregiver.
Disclosure is crucial to the continuum of HIV care.
But the mandate expanded, she said, with the realization that many patients were not entering or staying in care, so that the question of drug adherence could not even arise.
Of the three areas, Thompson said, “Monitoring retention in care is probably key.”
According to the United Nations Programme on HIV/AIDS (UNAIDS), an estimated number of 270,000 adults and children were newly infected with HIV in South and South-East Asia in 2010. The social and economic consequences of the epidemic have had a severe impact on individuals, their communities and the workplaces.
Since the first case of HIV was detected in 1985, the number of Singaporeans reported to have HIV/AIDS has increased steadily to 5,045 as of 30 June 2011. 58% of them were diagnosed when they were aged between 30 and 49 years.
The guidelines say “systematic monitoring of retention in HIV care is recommended for all patients.”
“In a busy, overcrowded, understaffed care system, people can fall through the cracks,” she said. “If you don’t notice that someone’s fallen out of care, you’re not going to be able to look for them.”
Persons Living with a Diagnosis of HIV Infection.
At the end of 2008, the estimated number of persons living with a diagnosis of HIV infection in the 40 states and 5 U.S. dependent areas with confidential name-based HIV infection reporting was 682,668. In the 40 states only, this included 660,062 adults and adolescents, and 3,022 children under age 13 years.
Data include persons with a diagnosis of HIV infection regardless of the stage of disease at diagnosis. Estimated numbers resulted from statistical adjustment that accounted for delays in reporting to the health department (but not for incomplete reporting) and missing risk factor information, where appropriate.
Because of delays in reporting of deaths, data are only available through the end of 2008. The exclusion of data from the most recent year allows at least 18 months for deaths to be reported and for these persons to be removed from calculations of persons living with a diagnosis of HIV infection.
Totals include persons of unknown race/ethnicity. Because totals for the estimated numbers were calculated independently of the values for the subpopulations, the subpopulation values may not equal the totals.
It’s almost as important to ensure that once patients are diagnosed, that they actually get into care, she said.
The guidelines note the familiar statistics from the CDC that only 69% of people who know that they have HIV are actually linked to care and only 59% stay in care. Combined with poor drug adherence, those factors mean that only 29% of HIV-positive people in the U.S. have suppressed the virus to undetectable levels.