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It is currently estimated that between 2.1 million and 3.0 million Indians are infected
with HIV (UNAIDS, 2007). Although the epidemic in India was first detected in
populations with a higher HIV exposure risk, such as sex workers, truck drivers,
and injection drug users (IDUs), infection has now spread to the urban and rural
general populations (Gangakhedar et al., 1997; Solomon, Kumarasamy, Ganesh,
& Amalraj, 1998). With the increasing provision of HIV clinical care, HIV-infected
Indians may be able to lead longer and more productive lives, making quality of life
Suniti Solomon, Anitha J. Cecelia, and N. Kumarasamy are with YRG CARE, Chennai, India. Ashita
Batavia is with Weill Cornell Medical College, New York. Kartik K. Venktesh and Kenneth H. Mayer are
with Brown Medical School/Miriam Hospital, Providence, RI. Lisanne Brown is with Tulane University,
New Orleans, LA. Praneeta Verma is with the AIDS Prevention and Control Society, Chennai, India. Ce-
line Daly is with Family Health International, Bangkok, Thailand. Vaishali S. Mahendra is with Horizons/
Population Council, New Delhi, India.
The authors thank the Population Council (Agreement Number AI99.77A) for supporting this study. The
authors are grateful to Isabelle de Zoysa WHO-Geneva (formerly with Horizons/Population Council,
New Delhi) and Christopher Castle UNESCO-Paris (formerly with Horizons/International HIV AIDS
Alliance, Washington DC).
Address correspondence to Kenneth H. Mayer, MD, Brown Medical School/Miriam Hospital, 164 Sum-
mit St., Providence, RI 02906; e-mail: Kenneth_Mayer@Brown.edu
104
QUALITY-OF-LIFE STUDY IN SOUTH INDIA 105
(QOL) an important area of concern for patients and providers of medical and social
services.
QOL is a multidimensional construct generally defined as a subjective evalua-
tion of ones functioning and well-being (Sowell et al., 1997). Incorporating patient-
reported data into the clinical encounter can assist caregivers in optimizing QOL
for patients with HIV (Wu, 2000). In the developed world, both generic health-
related QOL and HIV-specific instruments have been used to measure QOL among
HIV-infected individuals (Cunningham, Crystal, Bozzette, & Hays, 2005; Franchi &
Wenzel, 1998; Liu et al., 2006; Murri et al., 2003; Preau et al., 2007; Saunders &
Burgoyne, 2002; Wu, Hays, Kelly, Malitz, & Bozette, 1997) However, because indi-
vidual lifestyle, social norms, cultural practices, and belief systems vary between dif-
ferent populations, it is imperative to have a deeper understanding of the experiences
of HIV-infected Indians. Despite a few studies that have examined QOL among
HIV-infected Indians (Chanda, Deethivarma, Jairam, & Thomas, 2003; Kohli et
al., 2007; Wig et al., 2006) this is the first longitudinal study of QOL among HIV-
infected Indians to date.
The current study was undertaken to examine changes in QOL after initiat-
ing clinical care over a 12-month period within a resource-limited setting. These
data are derived from a larger prospective cohort study jointly implemented by Y.R.
Gaitonde Centre for AIDS Research and Education (YRG CARE), Horizons/Popula-
tion Council, and International HIV/AIDS Alliance to identify key elements of YRG
CAREs continuum of care program that meet the perceived needs of clients by as-
sessing their satisfactions with services and changes in perceived QOL.
METHODS
Study Setting
YRG CARE, a tertiary care facility for HIV/AIDS based in Chennai, India,
has provided comprehensive care for over 10,000 HIV-infected individuals to date.
Patients at YRG CARE are able to access anonymous voluntary counseling and
testing (VCT) services, prevention counseling, medical management including treat-
ment and monitoring, nutrition counseling, and a wide range of other support and
clinical services. Patients are advised to initiate highly active antiretroviral therapy
(HAART) at CD4 counts of less than 200 cells/microliter (L), or with CD4 counts
between 200 and 350 cells/L and an AIDS-defining illness. Patients are scheduled
for medical evaluation every 3 months or as clinically indicated.
The current study was conducted prior to the extensive rollout of HAART by
global funding agencies and the Indian government, at which time antiretroviral
therapy costs remained prohibitively expensive for most HIV-infected patients.
Participants
Enrollment criteria required provision of informed consent from HIV-infected
individuals over 18 years of age. Patients who were pregnant or with any history of
antiretroviral therapy use were excluded. In total, 356 patients were recruited from
YRG CARE from April 2000 to October 2000. All patients were clinically staged at
enrollment as asymptomatic, mild/ moderately symptomatic, or severely symptom-
atic.
106 SOLOMON ET AL.
Clinical Staging
Clinical staging was based on a modification of the WHO Adult Clinical Stag-
ing Guidelines (2003). Asymptomatic patients were defined as being without symp-
toms or with generalized lymphadenopathy only. The criteria for mild/ moderately
symptomatic patients included weight loss, herpes zoster, tinea infection in the skin,
papular pruritic eruptions, oral thrush, over 1 month of diarrhea or unexplained
fever, severe bacterial infections, pulmonary tuberculosis, or acute necrotizing ul-
cerative gingivitis/ periodontitis. Severely symptomatic patients included those pre-
senting with HIV wasting syndrome, extra pulmonary tuberculosis, cryptococcal
meningitis, toxoplasmosis, cytomegalovirus, esophageal thrush, and Pneumocystis
jiroveci pneumonia.
QOL
This study used the WHO Quality of Life (QOL) HIV instrument, Functional
Assessment of Human Immunodeficiency Virus Infection (FAHI) QOL instrument,
and the Medical Outcomes Study (MOS) measures of QOL to develop a QOL ques-
tionnaire appropriate for South Indian populations (Cella, McCain, Peterman, &
Wolen, 1996; World Health Organization HIV/AIDS Quality of Life Group, 1999).
After field-testing with the FAHI QOL instrument and the MOS measures of QOL,
the following five domains were retained and modified for use in this study: physical
well-being, psychological well-being, social support, sexual well-being, and relation-
ship with partner (Table 1). Each domain comprises items scored on a scale between
QUALITY-OF-LIFE STUDY IN SOUTH INDIA 107
Study Follow-Up
A trained research nurse collected demographic information at the first inter-
view. During the first interview participants also recorded answers to the survey
questionnaire assessing their QOL 6 months prior to coming to YRG CARE and at
the present time. Participants were scheduled for a second interview at 6 months and
a third interview at twelve months. Only the survey questionnaire was administered
at the second and third interview.
Statistical Analysis
Descriptive statistics were used to describe the characteristics of the study popu-
lation. All items in the QOL questionnaire were scored from 1 to 5, with a score of 1
indicating a low QOL and a score of 5 indicating a high QOL. For each participant,
the QOL score for each of the five domains of the questionnaire was calculated by
averaging the score of all items comprising that domain. Composite QOL scores for
each assessment were calculated by averaging the QOL score in each of the 5 study
domains. Clinical differences in the QOL domains were analyzed using ANOVA. A
p value of less than 0.05 was considered to be statistically significant. All statistical
analysis was performed with SPSS software, Version 13.0.
RESULTS
QOL Scores
For the 136 participants with 12 months of follow-up, the QOL scores signifi-
cantly improved in all five domains between their baseline visit, second interview,
and third interview (p < .01) (Table 3). The only decline in QOL scores longitudi-
nally was between the prior to YRG CARE retrospective assessment and the baseline
assessment in the sexual well-being domain (decline of 0.3) and the relationship
with partner domain (decline of 0.03). However, these declines were not statistically
significant. The greatest improvement in the Composite QOL Scores for the final
study cohort occurred between the baseline assessment and the second interview
(improvement of 0.3).
Overall QOL scores in each domain significantly improved for each clinically
staged group during the 12-month follow-up period (p < .01). The greatest improve-
ment in composite QOL scores for asymptomatic participants (0.24) occurred be-
tween Interview 2 and Interview 3. Both mild/moderately symptomatic and severely
symptomatic participants experienced the greatest improvement in composite QOL
108 SOLOMON ET AL.
scores (0.35 and 0.46, respectively) between the baseline assessment and Interview
2. In the four cases in which a domain QOL score decreased for a clinically staged
group between assessment time points, the decline was minimal ranging from 0.01
to 0.17 (Table 4).
DISCUSSION
clinical settings with infrequent lab-based testing, clinicians may also be able to use
QOL domain scores to access prognosis and plan clinical management.
Participants experienced significant improvements in their psychological well-
being and social support after accessing medical support for HIV. Data from sexual
well-being and relationship with partner domains indicate that patients perceived
improvements in these QOL areas after participating in counseling services made
available through YRG CARE. The current study suggests that providing a con-
tinuum of care that includes counseling services in addition to clinical care can sig-
nificantly improve the QOL of a patient population in a resource-limited setting.
The YRG CARE model of providing a continuum of care to HIV-infected pa-
tients was unique at the time this study was conducted. Participants in the final study
cohort reported a decline in QOL in the psychological well-being, sexual well-being,
QUALITY-OF-LIFE STUDY IN SOUTH INDIA 111
and relationship with partner domains between prior to YRG CARE and baseline
assessments. After accessing counseling services at YRG CARE, patients reported
QOL improvements in the aforementioned domains and the social support domain.
Our data suggests that providing counseling services that broadly address patient
concerns can impact patients composite QOL scores, and hence any treatment pro-
gram should combine a robust counseling program at every patient encounter as
part of comprehensive clinical care.
In conclusion, it is advisable that identifying modifiable determinants of low
quality of life of HIV-infected patients at different disease stage can lead to the de-
velopment of effective interventions within clinical care settings. This baseline data
may be useful in assessing improvement in QOL in light of the increasing role out
of HAART across the developing world. In consideration of the fact that this study
excluded patients receiving HAART, the results suggest that timely management of
symptoms and opportunistic infections alone in HIV-infected South Indians can have
a positive effect on their QOL.
Limitations
This is the first longitudinal study to date from an Indian setting reporting
changes in QOL over time. However, the final study cohort at 12 months represents
only 38.2% of the patients initially enrolled in this study. Explanations for this low
retention rate include the fact that 24 patients classified as clinically asymptomatic
on the baseline assessment missed the second interview but attended the third inter-
view and were excluded from the final study cohort. Participants were scheduled for
their second and third interviews over a two-week window period, and those unable
to follow-up at YRG CARE during this interval were excluded from the final study
cohort. This narrow follow-up interview interval may have been difficult for partici-
pants to accommodate because of travel costs, physical illness, or other limitations
within a resource-limited setting. The demographic characteristics of the final study
cohort are representative of all originally enrolled participants, with the exception of
the percent of unskilled workers. Unskilled workers may have been over-represented
in the final study cohort because they had the job-related flexibility to attend follow-
up interviews in the time period specified.
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