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 Syndromes.
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.
General health perceptions
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.
Social relationships
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.
Emotions
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.
Energy/fatigue
Low physical and mental energy levels were commonly reported.
Sleep
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.
Cognitive function
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 activities
Participants described having to rest more often and difficulty performing day-to-day tasks such as walking short distances or carrying light objects.
Coping
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.
The future
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.
Symptoms
HIV symptoms and treatment-related side-effects emerged as key quality of life issues.
Treatment
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 international standards.”
Duracinsky M et al. The development of PROQOL-HIV: an international instrument to assess the health-related quality of life of persons living with HIV/AIDS. J Acquir Immune Defic Syndr, online edition. DOI: 10.1097/QAI.0bo13e318245cafe, 2012 (click here for the free abstract).