Development and Validation of a Measure of Quality of Life for Chinese People Living with HIV and AIDS in Hong Kong

With the introduction of highly active antiretroviral therapy (HAART), the health status of patients with acquired immune deficiency syndrome (AIDS) becomes reversible. The human immunodeficiency virus (HIV) infection is no longer an incurable fatal disease, but a chronic disease that requires lifelong treatment. However, the emergence of HAART does not lessen the detrimental impact of the disease on the psychosocial well-being of patients, such as the effect of social stigmatization. The side effects of HAART are also well documented. Therefore, the advancement in treatment not necessarily improves the quality of life (QOL) of patients and monitoring patients’ QOL becomes crucial. Nevertheless, existing QOL measures specifically for HIV/AIDS patients were developed either before or shortly after HAART, which were used in Western countries. Therefore, the aim of this study is to develop and validate a culturally and contextually relevant QOL measure for the Chinese people living with HIV/AIDS in Hong Kong (HK).;This study comprised three phases. Phase One focused on generating items for the QOL measure. Qualitative research methodology was adopted to explore the meaning and constituents of QOL from the perspective of HIV/AIDS patients. Thirty-six (30 male, 6 female) participants were recruited for face-to-face individual interviews. Using thematic analysis, 10 QOL categories were identified, and 65 items were devised to form an item pool. The face validity and comprehensiveness of the item pool was affirmed by the participants. The initial draft of new measure, named CHAQOL, was thus established.;Phase Two focused on item reduction. A statistically driven approach was adopted to eliminate any psychometrically redundant and incoherent items. Based on the data collected from 168 participants, 40 items were retained to give the optimal internal structure and item consistency and variability. This initial version suggested a six-factor model of QOL for the Chinese people living with HIV/AIDS of HK. The six factors are: “life satisfaction”, “emotional well-being”, “physical well-being”, “stigma and discrimination”, “intimate relationships”, and “belief in antiretroviral therapy” (ART).;Phase Three focused on testing the psychometric properties of the CHAQOL. Another sample of 239 HIV/AIDS participants was recruited. The test and retest conducted two weeks apart. The weighted kappa values of 40 items ranged between 0.46 and 0.93 whereas the intraclass correlation coefficients of six QOL dimensions ranged between 0.82 and 0.97. For the internal consistency, Cronbach’s alpha ranged from 0.63 to 0.93. The results demonstrated CHAQOL to be reliable. In the evaluation of construct validity, the results of confirmatory factor analysis supported the six-factor model underlying CHAQOL. Multitrait scaling analysis showed that CHAQOL had good item convergent success rate ranging from 75% to 100% for the six subscales. All subscales of the CHAQOL, except the emotional well-being, had good item discriminant validity with an item discriminant success rate ranging from 71% to 100%. Known-group comparison indicated that the CHAQOL was able to distinguish the differences in all six QOL dimensions between Chinese HIV-infected people with different levels of disease severity, symptom severity and severity of ART-related side effects. The validated generic measure WHOQOL-BREF (HK) and the HIV Stigma subscale were used to examine the concurrent validity with the CHAQOL. Strong-to-moderate correlations were found only between the CHAQOL dimensions “life satisfaction”, “emotional well-being”, and “physical well-being”, as well as the domains of WHOQOL-BREF (HK), but not for the remaining dimensions. Similarly, strongest correlations were found between the CHAQOL subscales “stigma and discrimination” and the HIV stigma subscale. The results provide evidence on the reliability and validity of the CHAQOL.