Fears about transmitting HIV to
others, worries about the future, self-esteem problems, difficulty sleeping and
treatment issues are now important quality of life concerns for people living with HIV that are not
measured by existing resources, according to a report on a new quality of life measurement tool published in the online edition of the Journal of Acquired Immune Deficiency
The tool – called PROQOL-HIV (Patient Report Outcomes
Quality of Life – HIV) - was developed with the participation of 152 HIV-positive
patients in nine countries on five continents.
“PROQOL-HIV is a novel multidimensional HIV-specific HRQL
[health-related quality of life] instrument that strives to be sensitive to
socio-cultural context, disease stage and treatment in the HAART [highly active
antiretroviral therapy] era,” write the authors. “Important new HRQL issues
were uncovered from the culturally diverse experiences of PLWHA [people living
with HIV/AIDS] in previously under-represented populations.”
Effective antiretroviral therapy has transformed the
prognosis of many HIV-positive patients. However, people living with HIV still
experience considerable changes in their health-related quality of life. Tools
to measure such outcomes were developed in the era before potent HIV treatment
became available. Moreover, they did not take account of the geographic, ethnic
and cultural diversity of the epidemic.
Therefore an international team of investigators set out to
develop a new instrument that was sensitive to the impact of HIV therapy,
different diseases stages and applicable across settings. It derived from
in-depth interviews conducted with patients living with HIV in 2007 and 2008.
The patients were recruited in high-, middle- and low-income countries.
The interviews identified eleven broad areas of concern.
In all countries, patients made spontaneous reference to the
importance of their general health. Even slight improvements or declines were
considered to have an important impact on quality of life.
The quality of relationships with partners, family and
friends was identified as being very important to quality of life. This
included receiving support from a main partner, feeling socially acceptable
despite illness or side-effects, actual and perceived stigma, the fear of
transmission of HIV to others, worries over rejection, loneliness and
difficulties with disclosure.
A wide range of negative self-perceptions and emotions were
perceived to effect quality of life. These included feelings of shame, guilt,
inferiority, inadequacy or embarrassment. Also common were sadness, anxiety,
irritability and stress.
Low physical and mental energy levels were commonly
Many patients described difficulties falling asleep and
reduced sleep time. Pain was a frequent case, as was worry and thinking about
the consequences of infection with HIV.
Problems with memory, attentiveness and forgetfulness were
reported by a number of individuals. These difficulties had emerged since
infection with HIV or the initiation of antiretroviral therapy.
Physical and daily
Participants described having to rest more often and
difficulty performing day-to-day tasks such as walking short distances or
carrying light objects.
Individuals who were able to integrate HIV and its treatment
into their daily routine generally described themselves as coping well.
Religious or spiritual beliefs were also considered beneficial for coping.
Fears about the future because of HIV were reported by large
numbers of patients. Difficulties planning for the future were also common.
There was a perception that HIV would lead to a deterioration in health and
some patients believed that even minor infections such as flu would be fatal.
HIV symptoms and treatment-related side-effects emerged as
key quality of life issues.
Patients regarded treatment as life-saving. Nevertheless,
there were concerns about adherence and some patients in low- and middle-income
countries feared that supplies of medicines would dry up.
The investigators noted that a number of key quality of
health concerns were not covered by existing questionnaires. These include fear
of infecting others, concerns for the future, satisfaction with care,
self-esteem problems, conception and raising a family, sleeping difficulties,
and the impact of HIV on work.
“We identified 11 HRQL themes that broadly encapsulated the
HIV experience. Subsumed within these themes were seven issues important to HIV
patients yet absent from any single existing instrument,” comment the authors.
“Incorporation of the newly identified issues into HRQL measurement via PROQOL
is clearly a step forward in accounting for the long-term experience of living
with HIV in the HAART era.”
They conclude: “PROQOL-HIV shows much promise as an HRQL
instrument reflective of the themes that dominate the experience of HIV
patients…and important issues which are not measured by existing instruments.
It has been developed simultaneously across nine countries, following rigorous