Qual Life Res (2011) 20:91–100
DOI 10.1007/s11136-010-9729-y
Factors influencing the quality of life in patients
with HIV in Malaysia
C. I. Hasanah • A. R. Zaliha • M. Mahiran
Accepted: 10 August 2010 / Published online: 26 August 2010
Ó Springer Science+Business Media B.V. 2010
Abstract
Purpose The aim of this study was to determine the socio-
demographic, clinical and psychological factors influencing
the quality of life (QOL) in patients with human immuno-
deficiency virus infection and acquired immune deficiency
syndrome (HIV/AIDS).
Methods This was a cross-sectional study on 271 patients
with HIV infection attending an HIV clinic in Kota Bharu,
Malaysia. Participants completed the Malay version of the
Functional Assessment of HIV Infection (FAHI) and
Malay Hospital Anxiety Depression Scale (HADS).
Results The patients functioned satisfactorily in the
physical domain. They were mostly impaired in the social
domain. Those who acquired the HIV infection via a het-
erosexual route seemed to have a significantly lower social
well-being, while those who acquired HIV via drug injection
were not associated with losses in the overall QOL or any of
its domains. Non-disclosure paradoxically had a greater
effect on social well-being. About 38% had possible anxi-
ety, depression or both, and these emotional disturbances
were significantly associated with total FAHI and its five
domains.
C. I. Hasanah (&)
Department of Psychiatry, School of Medical Sciences,
Universiti Sains Malaysia, 16150 Kubang Kerian,
Kota Bharu, Malaysia
e-mail: hasanah@kb.usm.my
A. R. Zaliha
General Hospital Alor Star Kedah, Alor Star, Malaysia
M. Mahiran
Department of Medicine, Hospital Raja Perempuan Zainab II
(HRPZ II), Kota Bharu, Kelantan, Malaysia
Conclusions Psychological and social well-beings were
more affected than physical well-being in out-patients with
HIV infection in Kota Bharu, Malaysia. The study suggests
that the patients with HIV infection should receive better
psycho-education and psychological intervention.
Keywords Quality of life
HIV/AIDS
Malay FAHI

HADS
Introduction
The World Health Organization estimates that around 2.7
million people become infected with HIV every year and
that 2 million die of AIDS [1]. HIV is spreading most
rapidly in Eastern Europe and Central Asia, where the
number of people living with HIV increased by 150%
between 2001 and 2007 [2]. The Malaysian AIDS Coun-
cil’s website published that up to June 2009 the Ministry of
Health (MOH) of Malaysia had reported a total of 86,127
HIV infections and a total of 14,955 AIDS cases, with
13,003 total AIDS deaths. Through June 2009, there were
73,124 People Living with HIV (PLHIV) in Malaysia [3].
Out of the cumulative reported cases, 71.0% acquired the
infection through sharing needles among injecting drug
users (IDUs). Heterosexual contact and homosexual/
bisexual contact resulted in 16.7 and 1.9% of infections,
respectively [3].
The Ministry of Health reported a downward trend in
IDUs, from 74.2% in 2002 to 53.6% in 2006. On the other
hand, the proportion of heterosexually acquired HIV
infections has steadily increased from 17.5% in 2002 to
27.4% in 2006. In 2005, the states of Kelantan, Kuala
Lumpur and Selangor remained the top three states in
Malaysia with the highest prevalence of HIV in females.
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The state of Kelantan, with a cumulative total of 970
reported female HIV cases, has the highest number of
women found to be infected since 1986 [2].
Kelantan is situated in the north east part of peninsular
Malaysia, bordering southern Thailand. It is a state gov-
erned by the PAS (Pan-Malaysian Islamic Party), and the
Islamic governing includes the Islamic code of behaviour,
dressing and lifestyle. The increasing number of HIV
infections in females may indicate unsafe sex or failure of
infected husbands to disclose their HIV status to their
spouses. In the perception of some Muslim locals, PLHIV
are considered to be living the punishment of their sinful
activities like drug misuse and prostitution. Being infected
with HIV is possibly, and probably, perceived as having
weakness in character and being sinful.
This double stigma may have had some influence on
PLHIV, and they may have carried on with their lives in
denial. With inadequate emotional insight, but with better
health care and antiretroviral therapy, PLHIV may actually
enjoy a satisfactory quality of life (QOL). Non-disclosure
of illness and maintaining the norms of marriage and
reproduction may contribute to the increasing prevalence
of HIV cases in heterosexual sexual relationships, females
and their off-spring. The prevailing attitude of prospective
male spouses for not being open about their HIV-positive
status has induced a sense of responsibility to the State of
Kelantan; henceforth, they passed a law on compulsory
HIV testing prior to marriage.
There are many factors that influence the QOL in PLHIV.
Previous studies have examined the relationships between
health-related quality of life (HRQOL) and depression,
social supports, HIV infection stage, functioning in daily
living, employment, perceived health status, severity of HIV
infection symptoms, stress and adverse effect of treatments
for HIV infection among subjects living with HIV infection
[4, 5]. Viral load and QOL were negatively correlated in
PLHIV attending out-patient clinics [6].
In the history of modern medicine, there has not been any
other illness that is so entwined with moral, religiosity,
social and existential values as HIV and AIDS. In Malaysia,
where Islam is declared to be the official religion, conflicting
voices and attitudes towards sex education continue to
reverberate between non-governmental organisations, reli-
gious institutions and health or governmental policy makers,
slowing the progress of primary intervention. There is an
urgent need to get a depiction of the QOL of PLHIV and the
factors that may have influenced their QOL, so that the
results could influence policy makers and the Malaysian
society of the importance to approve intervention modules
that could prevent the rapid spread of HIV.
The data from research conducted in local populations
will more realistically re-orientate policy makers in
addressing the issue of improving the aspects of HIV
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Qual Life Res (2011) 20:91–100
psycho-education, infection control and the standard of
care and rehabilitation of PLHIV. To date, there is no
published QOL study on PLHIV in Malaysia, and data
from foreign countries could not be generalised to the local
population. Similarly, the local data on the QOL of patients
with HIV could not be generalised to other parts of the
world. However, the outcome of this study will be an
interesting source of comparison to other similar studies
from different countries.
Thus, the purpose of our study was to determine whether
socio-demographic, clinical and psychological factors have
any influence on the QOL of PLHIV. Due to our financial
and time constraints, our study was limited to PLHIV who
were on regular follow-up in the infectious diseases spe-
cialist clinic in Kelantan.
Methods
Study design and setting
The study design was cross-sectional, and sample recruit-
ment was performed carried out by convenience sampling.
The study population was the consecutive patients attending
the out-patient Infectious Disease clinic of Hospital Raja
Perempuan Zainab II, Kota Bharu Kelantan, in a period of
11 months (April 2008–March 2009). It is the only centre in
Kelantan that has an infectious consultant physician.
According to the Population and Housing Census of
Malaysia (2000), Kelantan has a population of a little more
than one million (1,313,014), with a racial distribution of
Malay (95%), Chinese (3.8%), Indian (0.3%) and others
(0.9%).
The inclusion criteria were (i) patients with confirmatory
serology results, physician’s diagnosis and notification to
the Ministry of Health; (ii) ages between 18 and 59 years;
(iii) a duration of illness for at least 3 months from the date
of illness notification; and (iv) an ability to read and
understand the Malay language. The exclusion criteria were
(i) pregnancy and (ii) a co-morbid medical condition unre-
lated to HIV. The sample size was computed using Power
and Sample Size Calculation (version 1.0.13) software
based on the overall estimated prevalence of approximately
20% and a female-to-male relative risk of 2. The minimum
computed sample size was 256.
Questionnaires
The instruments used in this study were (1) the Biological
data, socio-demographic and clinical variables form; (2) the
Malay version of Functional Assessment of Human Immu-
nodeficiency Virus Infection (FAHI); and (3) the Malay
version of Hospital Anxiety and Depression Scale (HADS).
Qual Life Res (2011) 20:91–100
Malay version of functional assessment of human
immunodeficiency virus infection (FAHI)
This questionnaire was part of the Functional Assessment
of Chronic Illness Therapy (FACIT) that was developed
and improved since 1997 by the Center on Outcomes,
Research and Education (CORE). Many of the FACIT
questionnaires have been translated into more than 45
languages [7]. This instrument contains the entire FACT-G
(Functional Assessment for Chronic Therapy—General)
and HIV/AIDS-specific concerns, thus allowing for cross-
disease comparisons. With its international acceptance, the
results could be in comparison with those from other
countries. It measures QOL on the following sub-scales:
physical well-being (13 items), emotional well-being (10
items), function and global well-being (13 items), social
well-being (8 items), cognitive functioning (3 items) and
three items reflecting both general illness and HIV/AIDS-
specific QOL concerns. This instrument has been shown to
have a good internal consistency (0.91 for the total scale
and ranging from 0.73 to 0.90 for the sub-scales), has a
strong construct validity and known group’s validity and is
sensitive to change [7, 8].
The Malay version was translated and qualitatively
validated in 2007 by the collaboration of CORE [8] with
the first author (Hasanah). The Cronbach’s alpha value for
each sub-scale of the Malay FAHI from local pilot testing
on 30 patients with HIV was as follows: physical well-
being (a = 0.91); emotional well-being/living with HIV
(a = 0.88); functional and global well-being (a = 0.83);
social well-being (a = 0.86); and cognitive functioning
(a = 0.58). The total FAHI score is calculated as the sum
of five sub-scale scores ranging from 0 to 176. A higher
total score and sub scale domain scores reflect a better
perceived QOL.
Malay version of hospital anxiety and depression scale
(HADS)
The translated Malay version has been used in various
studies in Malaysia by Lim and Ramli [9], Hatta [10],
Fariza [11] and many other researchers. A validation study
on the Malay version of HADS by Fariza [11] revealed a
sensitivity of 92.3% and specificity of 90.8% for depression
at 8/9 cut-off points as well as a sensitivity of 90.0% and
specificity of 86.2% for anxiety at 8/9 cut-off points. In this
study, a cut-off point of 9 was accepted for both anxiety
and depression scores.
Data collection
After signing the informed consent, patients were given
FAHI and HADS questionnaires. They were given rightful
93
privacy to answer the two questionnaires in their own time.
The investigator (A.R. Zaliha) was available to provide
assistance when needed, without influencing patients’
answers. The same investigator obtained the socio-demo-
graphic and clinical information from patients’ medical
records.
Data entry and statistical analyses
All data were entered and analysed using the Statistical
Package for Social Science (SPSS) version 12.0 software.
The dependent variables were the scores of each sub-scale
and the total score of FAHI. Descriptive statistics were
calculated for all the outcome variables and were expressed
as mean (SD) and frequency (%) as appropriate. Regression
analyses were performed using the socio-demographic,
clinical and psychological characteristics as independent
variables. Model assessment was done by determining the
linearity assumptions, equal variance assumption and out-
liers using standardised residual plots. A model-building
strategy was implemented in which simple linear regression
analyses were performed with the above variables and then
multivariable regression analyses were conducted using
independent variables that had a P \ 0.25 in the univariate
analysis. Finally, forward, backward and step-wise elimi-
nation strategies were used in which a series of multiple
regression analyses were performed. The independent
variables with the lowest P value from the previous analyses
were eliminated from subsequent analysis, so that the final
model contained only statistically significant (P value \0.05)
predictors.
Results
During the study period, a total of 285 patients met the
study inclusion criteria. Out of this number, three patients
refused participation without giving any valid reason, two
were illiterate and nine failed to complete the question-
naire. The final number of enrolled patients was 271. The
socio-demographic data and clinical data of the 271 sub-
jects are shown in Tables 1 and 2, respectively. The vari-
ables listed in Tables 1 and 2 were treated as independent
variables in the regression analyses.
Male subjects were slightly more than female subjects
(57.6–42.4%), and most of the patients were in the age
group of 30–39 years. The dominance of Malay and
Muslim subjects proportionally reflected the racial distri-
butions in the state of Kelantan. Half of the patients were
married and stayed with their spouses and children. Two-
thirds of the respondents were employed and had monthly
incomes of less than 1,000 Ringgit Malaysia (RM). Nearly
half of the subjects lived with their spouses, and more than
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94 Qual Life Res (2011) 20:91–100

Table 1 Mean scores of functional assessment of human immuno- Table 2 Mean scores of FAHI questionnaire, based on the clinical
deficiency virus infection (FAHI) questionnaire, based on the socio- variables (n = 271)
demographic variables (n = 271)
Variable n (%) Total FAHI P value
Variable n (%) Total FAHI score P value
Mean SD
Mean SD
Duration of illness (months)
Age (years) 3–12 31 (11.4) 116.35 28.55 0.683#
21–29 39 (14.4) 110.59 23.22 0.708@ 12 and above 240 (88.6) 112.6 29.18
30–39 163 (60.1) 112.36 30.43 Source of HIV infection
40–49 54 (19.9) 117.04 28.62 IDU 99 (36.5) 108.65 32.21 0.300@
50 and above 15 (5.5) 112.20 30.75 Heterosexual 119 (43.9) 114.72 26.78
Gender Multiple sexual partners 33 (12.2) 120.55 30.94
Male 156 (57.6) 111.65 30.51 0.114# (MSP)
Female 115 (42.4) 114.89 27.04 IDU & MSP 18 (6.6) 111.94 20.26
Ethnicity Others 2 (0.7) 114.50 16.26
Malay 234 (86.3) 110.65 29.31 0.020# CD4? count
Non-Malay 37 (13.7) 128.08 22.69 \200 84 (31) 103.54 31.61 0.055#
Religion 200 and above 187 (69) 113.51 26.88
Muslim 237 (87.5) 110.71 29.22 0.016# HAART
Others 34 (12.5) 129.15 22.50 Yes 194 (71.6) 112.84 29.23 0.578#
Marital status No 77 (28.4) 113.51 28.88
Single 59 (21.8) 102.98 28.31 0.010@ Hepatitis C
Married 136 (50.2) 117.81 28.13 Yes 117 (43.2) 108.35 31.35 0.020#
Divorced 31 (11.4) 109.55 30.99 No 154 (56.8) 116.58 26.79
Widow 45 (16.6) 114.13 28.88 Tuberculosis
Education Yes 67 (24.7) 105.09 33.00 0.009#
@
None 3 (1.1) 95.67 39.88 0.124 No 204 (75.3) 115.63 27.26
Primary 24 (8.9) 120.33 30.51 Anaemia
Secondary 228 (84.1) 111.65 29.06 Yes 16 (5.9) 97.94 27.41 0.637#
Tertiary 16 (5.9) 124.88 21.88 No 255 (94.1) 113.97 28.97
Occupation Psychological
Unemployed 98 (36.2) 105.34 27.64 0.001# Possible anxiety only 24 (8.9) 89.71 20.13 \0.001@
Employed 173 (63.8) 117.38 29.05 Possible depression only 25 (9.2) 96.08 20.67
Income per month (in Ringgit Malaysia) Possible anxiety & 55 (20.3) 82.31 20.93
499 and below 108 (39.9) 104.78 29.11 0.003@ depression
500–999 92 (33.9) 116.49 28.25 No anxiety or depression 167 (61.6) 129.03 20.57
1,000–1,499 40 (14.8) 120.43 29.34 # @
Independent t-test; ANOVA significant P \ 0.05 (2-tailed)
1,500–1,999 12 (4.4) 118.42 24.35
2,000 and above 19 (7) 124.16 25.33
those who disclosed and those who had not disclosed their
Living arrangement
HIV status.
Alone/friend 54 (19.9) 109.81 29.35 0.041@
More than 1/3 received the highly active antiretroviral
With parents 87 (32.1) 108.00 28.45
therapy (HAART) subsidised by the government, and their
With spouse 130 (48) 117.72 28.86 total FAHI scores were not significantly different from
Disclosure those who were not on HAART. The subjects had mostly
Yes 235 (86.7) 113.54 28.76 0.322# been registered as patients for more than 12 months since
No 36 (13.3) 109.67 31.32 the date of the notification of their HIV infection to MOH.
#
Independent t-test; @
ANOVA significant P \ 0.05 (2-tailed) One quarter of the respondents had a co-infection with
tuberculosis, and almost half of the patients were Hepatitis
eighty percent of the subjects had disclosed their HIV C-positive. The subjects who were co-infected with
status to either their spouse or at least one member from tuberculosis (P = 0.009) and hepatitis (P = 0.02) showed
among their immediate relatives. However, there were no significantly lower total FAHI scores than those without the
significant differences in the total FAHI scores between infections. Screening with HADS showed that 167 (61.6%)

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Qual Life Res (2011) 20:91–100 95

respondents were free from possible anxiety or depression, seemed to be best in the physical domain, the percentage of
while 24 (8.9%) had possible anxiety, 25 (9.2%) had pos- which was higher than that of the total FAHI score.
sible depression and 55 (20.3%) possibly had both. Table 4 summarises only the significant associations of
Table 3 shows the overall means of total FAHI and its the independent variables with the total FAHI and its
domain scores. If the mean domain scores were taken as domain scores. The independent variables that were asso-
the percentage of the highest score for their respective ciated with the total FAHI score differed from those that
domain, the subjects scored most poorly in the social were associated with individual domain scores and the
domain, followed closely by the emotional domain. They variables that were associated with the social domain were
particularly distinctive. The overall (total FAHI score)
Table 3 Mean FAHI total and domain scores (n = 271) well-being was better among non-Malays (although only
13.7% were non-Malays), patients with employment,
Domain and total scores N = 271 Mean Score range
(SD) (%) patients with CD4? count greater than 200 and patients
without psychological disturbances. The respondents with
Physical well-being (PWB) 30.88 (9.15) 0–40 (77%) better physical well-being were more likely to have had
Emotional well-being (EWB) 23.02 (10.72) 0–40 (57%) HIV for between 3 and 12 months of duration and CD4?
Functional and global well-being 34.44 (10.15) 0–52 (66%) count greater than 200. They also did not have anaemia,
(FGWB)
anxiety and depression. A better emotional well-being was
Social well-being (SWB) 16.6 (7.89) 0–32 (52%)
associated with older subjects and with non-Muslim.
Cognitive functioning (CF) 8.09 (3.07) 0–12 (67%)
In contrast to emotional well-being, social well-being
Grand total 113.03 (29.08) 0–176 (67%)
was poorer in older subjects. Those who contracted the

Table 4 Significant associations between the quality of life (Total, FWB, EWB, FGWB, SWB and cognitive scores of FAHI) and independent
variables using simple linear regression and multivariable linear regression (n = 271)
Independent variable SLRa MLRb
bc (95% CId) T state P value Adjusted bf (95% CId) t State P value

Total FAHI
Ethnicity
Malay 17.43 (7.51, 27.36) 3.46 0.001 -10.26 (-17.19, -3.32) -2.92 0.004
Non-Malay 0g
Employment
Unemployed 12.04 (4.94, 19.15) 3.34 0.001 -9.24 (-14.18, -4.31) -3.68 \0.001
Employed 0g
CD4 count
\200 13.75 (6.40,21.10) 3.68 \0.001 -6.90 (-12.04, -1.76) -2.64 0.009
200 and above 0g
Psychological
Anxiety only -36.41 (-44.99, 27.83) -8.35 \0.001
Depression only 12.13 (2.41,8.53) 3.52 0.001 -30.26 (-38.59, 21.92) -7.15 \0.001
Anxiety and depression -45.03 (-51.06, 39.01) -14.72 \0.001
No anxiety/depression 0g
Physical domain
Duration of having HIV (months)
3–12 -5.56 (-8.94, -2.19) -3.24 0.001 3.73 (0.89, 6.57) 2.59 0.010
More than 12 months 0g
CD4 count
\200 3.05 (0.30, 5.80) 2.18 0.030 -3.91 (-5.88, -1.92) -3.88 \0.001
200 and above 0g
Anaemia
Yes 8.97 (4.45, 13.49) 3.90 \0.001 5.06 (1.18, 8.94) 4.18 \0.001
g
No 0

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Table 4 continued
Independent variable SLRa MLRb
bc (95% CId) T state P value Adjusted bf (95% CId) t State P value

Psychological
Anxiety only
Depression only 2.59 (0.16, 2.12) 2.31 0.022
Anxiety and depression 2.30 (1.73, 2.87) 7.94 \0.001
No anxiety/depression 0g
Cognitive domain
Employment
Employed 1.10 (0.35, 1.86) 2.88 0.004 -0.85 (-1.49, -0.22) -2.64 0.009
g
Unemployed 0
Psychological
Anxiety only -2.77 (-3.86, -1.68) -5.01 \0.001
Depression only 1.02 (0.82, 1.21) 10.16 \0.001 -2.85 (-3.92, -1.79) -5.27 \0.001
Anxiety and depression -3.89 (-4.66, -3.12) -9.95 \0.001
No anxiety/depression 0g
Emotional domain
Age 0.32 (0.14, 0.50) 3.55 \0.001 0.22 (0.07, 0.36) 2.91 0.004
Religion
Muslim 8.42 (4.67, 12.16) 4.20 \0.001 -6.39 (-9.49, -3.29) -4.06 \0.001
g
Non-Muslim 0
Psychological
Anxiety only -10.66 (-14.34, -6.98) -5.70 \0.001
Depression only 3.87 (3.21, 4.53) 11.54 \0.001 -3.66 (-7.25, -0.07)) -2.01 0.046
Anxiety and depression -14.54 (-17.15, -11.94) -10.98 \0.001
No anxiety/depression 0g
Functional and global well-being domain
Religion
Muslim 4.98 (1.36, 8.61) 2.71 0.007 -2.26 (-5.30, 0.79) -1.46 0.146
Non-Muslim 0g
Employment
Unemployed 5.65 (3.22, 8.09) 4.57 \0.001 -4.84 (-6.93, -2.75) -4.56 \0.001
Employed 0g
Psychological
Anxiety only -8.95 (-12.53, -5.37) -4.92 \0.001
Depression only 3.40 (2.44, 3.77) 9.15 \0.001 -9.78 (-13.29, -6.28) -5.50 \0.001
Anxiety and depression -11.78 (-14.32, -9.25) -9.16 \0.001
No anxiety/depression 0g
Social domain
Age -0.14 (-0.28, -0.01) -2.14 0.033 -0.16 (-0.27, -0.06) -2.96 0.003
Circle of confidentiality
Not known to others 6.01 (3.13, 8.70) 4.39 \0.001 -6.19 (-8.65, -3.73) -4.95 \0.001
g
Known to others 0
Source of HIV infection
IDU 0.57 (-0.07, 1.20) 1.76 0.08 0g
Heterosexual -2.63 (-4.50, -0.77) -2.78 0.006
MSP -2.34 (-5.08, 0.41) -1.68 0.095
Others -12.20 (-21.92, -2.49) -2.47 0.014
IDU and MSP -2.77 (-6.26, 0.71) -1.57 0.118

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Table 4 continued
Independent variable SLRa
bc (95% CId) T state
Psychological
Anxiety only
Depression only 0.22 (0.17, 0.27)
Anxiety and depression
No anxiety/depression
a
Simple linear regression
b
Multivariable linear regression [R2 = 0.62 (Total score); R2 = 0.35 (PWB); R2 = 0.39 (EWB); R2 = 0.54 (PGWB); R2 = 0.37 (SWB);
2
R = 0.41 (Cognitive)]. There was no interaction between the fixed factors and controlled variables and no multicollinearity problem; model
assumptions were met]
c
Crude regression coefficient
d
Confidence interval
e
t Statistic
f
Adjusted regression coefficient
g
Reference
illness via heterosexual relationships also showed a poorer
social well-being when compared to IDUs. Non-disclosure
of HIV status seemed to affect the patients’ social well-
being negatively. The functional and global well-being was
lower in those who were unemployed and who had possible
anxiety, depression or both. Employment has influence on
cognitive well-being. The psychological state, be it anxiety
or depression or both, impaired the overall QOL and the
patients’ functioning in all five FAHI domains. Factors like
increasing age, non-disclosure of the HIV status and IDU
status were more significant in lowering the social well-
being.
There was no significant difference between genders in
association with the overall QOL and its four domains, and
same analyses done separately for each gender resulted in
similar findings.
Discussion
The total FAHI and domain scores in this study were
similar to those reported in the validation paper by Pe-
terman et al. [7] on revised FAHI in 1997. Peterman’s
study was pre-HAART era, at a time when HIV-infected
patients had poor prognoses and suffered from a greater
stigma. A study by Diamond et al. [12] published in 2010
in patients with non-Hodgkin lymphoma with HIV infec-
tion also showed similar findings to Peterman. We could
infer that our total and domain scores were in between that
of Peterman and Diamond. What is interesting, however, is
that our results showed that the social domain scores were
considerably lower than those of Peterman and Diamond,
whereas the total and other domains scores were similar to
97
MLRb
P value Adjusted bf (95% CId) t State P value
-7.92 (-10.90, -4.96)
8.81 \0.001 -5.96 (-8.88, -3.04) -5.26 \0.001
-6.49 (-8.63, -4.36) -4.02 \0.001
0g -5.98 \0.001
their results. This is quite remarkable when considering
that Peterman’s study was conducted in the pre-HAART
era, and Diamond’s study was carried out in patients with
double diseases in very recent years. This severe impair-
ment in social well-being in patients with HIV infection
may be unique to our local population, which is a popu-
lation that is still very biased and prejudiced towards the
moral and religious associations of HIV infection and its
association with drug misuse and prostitution.
There have been many papers published from studies on
factors influencing the QOL in patients with HIV, but the
results from our study are interesting because of the
depiction of differential factors that were significantly
associated with differing domains of QOL. Researchers
may find it tiresome when studies of similar design utilise
different QOL measures, making their data non-compara-
ble with the previously reported studies. Similarly, this
study was comparable in design but different in the QOL
and psychological measures to the one conducted by Perez
et al. [13]. Their study measured QOL with the MOS-HIV,
a 35-item questionnaire developed from the Medical Out-
come Study (MOS) [14]. In MOS-HIV, social function is
one of the 11 health dimensions, which are eventually
scored into only two summaries, the physical (PHS) and
the mental health. In spite of the different measures of
HRQOL, our study shares similar findings with Perez et al.
on the poorer overall QOL in patients with low CD4?
count, hepatitis, un-employment and impaired psycholog-
ical status.
Perez et al. [13] also found that IDUs have inferior QOL
values, but our results showed that IDUs have comparable
overall QOL values to others after controlling for the
confounding factors. Interestingly, our study revealed that
123
98
patients who were not IDUs but who had acquired HIV via
a heterosexual relationship had a poorer QOL values in the
social domain as in comparison with others who got HIV
via other routes. Further, those who did not disclose their
HIV status also experienced a significantly inferior QOL in
the social domain. These are important findings, especially
in the context of the socio-cultural-religious values of the
study population, as elaborated earlier.
However, another reason for the above result could be
that the majority of IDUs in this study were on methadone
maintenance. Ninety-nine out of hundred and fifty-six
males subjects were IDUs (63%), and all of these IDUs
were on the methadone maintenance programme. They
probably had come to term with the stigma perceived by
others. Their regular attendance in clinics for methadone
treatment, and regular contact with health caregivers, may
be perceived as a support system, thus boosting their social
well-being over those who acquired their infection via a
heterosexual sexual relationship. Those who did not dis-
close their HIV status had poorer QOL values in the social
domain. No such result was found in previous studies. The
lack of a finding on the impairment in social functioning
may be due to the popular use of the MOS-HIV, which
summarised findings only based on physical health (PHS)
and mental health (MHS).
Even if relatives and family did not know of a patients’
HIV status, it seems that the burden of self-perceived
stigma had a remarkable influence on that patients’ social
well-being. It is also possible that those who disclosed their
HIV status may have developed better coping mechanisms
in order to deal with the emotional and social stresses of
living with HIV. This is consistent with the recent study by
Edwin et al. [15], which indicated that the support of close
relatives is fundamental in coping with HIV/AIDS and in
providing the emotional and material support necessary for
sustained adherence to treatment. Support can only be
derived if significant others know about a subjects’ HIV/
AIDS status. Malay patients, who made up the ethnic
majority, reported poorer QOL scores than non-Malays,
who are the ethnic minority. The finding was different from
other studies that showed that it is typically ethnic minor-
ities that report poorer QOL [16, 17]. Other studies
attributed social inequality to poorer QOL in ethnic
minority. Non-Malays only comprised 13.7% of the total
subjects. As most Malays were Muslim, religion could be
the factor that has influence on QOL.
Our findings showed that age had a significant associa-
tion with social and emotional aspects of QOL, with
younger patients having more impairment in the emotional
and older patients in the social domains of QOL. These are
interesting associations in view of the fact that age was not
significant in association with the physical or functional
and global well-being of FAHI. Rao et al. [17] found that
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Qual Life Res (2011) 20:91–100
the passive coping in older patients was associated with a
decline in QOL. Chesney et al. [18] found that their older
patients had less social support and more distress than
younger persons with HIV infection.
Another finding from this study showed that patients
who had HIV for longer than 12 months had poorer
physical functioning. This is consistent with previous
research [16]. However, Honiden et al. [19] showed
improvement of HRQOL with chronicity. They studied the
effect of HIV infection on HRQOL and showed that one-
third of the subjects reported an improved HRQOL with
increasing years after the diagnosis. The availability of
treatment coupled with a healthy lifestyle and diet, espe-
cially in motivated patients, could easily result in a better
QOL. The concept of the response-shift or positive reap-
praisal of one’s health after experiencing a life-threatening
crisis or illness is well understood in all QOL researches.
Studies examining response shift phenomena suggest that
underlying processes of appraisal differ across people and
over time and can greatly influence how people answer
questions on QOL measures [20].
We found that the participants with CD4? count less
than 200 reported a poorer physical well-being and overall
QOL than those with CD4? count above 200. This is
consistent with previous studies [21–23]. From our study,
we could show that the low CD4? count only influenced
the physical domain of QOL. The CD4? count was not a
significant factor in emotional, functional and global, social
and cognitive functioning. However, the extent of its effect
on the physical well-being was large enough to influence
the total FAHI.
Rao et al. [17] in 2007 found that the patients with lower
CD4? count reported better emotional and social well-
being than those with higher CD4? count. The authors
proposed that patients with low CD4? count may have
developed coping mechanisms in order to deal with the
emotional and social stresses of living with HIV. Here, the
concept of the response-shift as mentioned earlier may
have modified the expected declined in QOL. Call et al. [6]
in 2000 found that the QOL of patients with HIV was
independent of the CD4? cell count, but a lower viral load
positively impacted the QOL of HIV-positive patients.
In this study, about 38.4% of the subjects had depres-
sion, anxiety or both on screening with HADS. These
psychological states consistently appeared as significant
associations to overall QOL and the five domains. Psy-
chological well-being is essential in mind–body healing
and its association with natural killer cell activities is
known [24, 25]. Treatment with an antidepressant has been
demonstrated to reduce depression and significantly
improve QOL [26]. A wellness, insight and harm-reduction
orientation in a psychological intervention module will go
a long way in improving QOL and probably could help in
Qual Life Res (2011) 20:91–100
arresting the heterosexual spread of HIV. Many patients
only rely on their doctors’ advice, and their doctors may
only see solutions to their patients’ problems in the form of
pills and injections.
Limitations and strength
This study has its own limitations. As we only sampled
patients who were well enough to attend an outpatient clinic,
the result could not be generalised to all patients with
HIV/AIDS. The subjects’ ethnicity was biased towards
Malay/Muslim, and the cultural and religious influences
may differ from other states in Malaysia. The gender ratio of
subjects that participated in our study did not reflect the ratio
of HIV-infected persons given by the Malaysian AIDS
Council. In 2008 the ratio was 4 men to every 1 woman were
infected with HIV [3]. Our study showed an almost equal
male to female ratio (1.3:1) among the HIV clinic attendees.
The higher than the expected number of female patients on
follow-up was probably due to females being better health
care consumers, or the possibility of females surviving
longer from the infection.
No structured interview was conducted to diagnose
psychiatric illnesses, particularly anxiety and/or depres-
sion. There was also a lack of information about patients’
AIDS status or stages, clinical symptoms, viral load and
side-effects from treatment. The use of self-administered
questionnaires to measure the QOL as well as HADS may
have led to recall bias. The researchers had to acquiesce to
these limitations due to the limited resources. Ideally, a
cohort study with prospective data collection would reduce
most of those biases. A qualitative study on issues of QOL
that are of concern to PLHIV of different genders, routes of
HIV infection, and roles played in society will probably be
more helpful to researchers before proceeding into inter-
vention research. In addition, further quantitative research
is needed to address gender differences in the patterns of
QOL determinants, as these issues were not the purpose of
the present analysis.
The strength of this study was the usage of the FAHI.
Clayson et al. [27] stated that although there is no single best
HRQOL measure for use in HIV/AIDS clinical trials, FAHI
is one of the most favourable questionnaire when in com-
parison with others. Our study demonstrated its superiority in
highlighting different clinical and non-clinical factors that
were differentially associated with the five domains descri-
bed by FAHI. This tool can assist clinicians and researchers
to obtain a global view of the patients’ QOL. As FAHI has
been translated into many languages and validated in many
centres world-wide, the results could be compared with
studies from other parts within and outside Malaysia.
Future studies should take to heed of the results and
recommendations from this study. As possible depression
99
and anxiety were high in patients, a module for cognitive-
behavioural intervention should be given in a randomised,
controlled trial. Such a module should probably also
incorporate an approach of psycho-education on stigma
and the pros and cons of disclosing one’s HIV status.
Conclusions
HRQOL is indeed a multi-facets or multi-domains mea-
sure. Our study showed that PLHIV were most impaired in
their social well-being domain, followed by emotional
well-being domain. Generally, the physical well-being was
good. Non-disclosure paradoxically affected social well-
being. A high percentage of patients had possible anxiety,
depression or both, and psychological disturbances seemed
to affect all domains of QOL.
The results from this study suggest that PLHIV should
receive better psycho-education and psychological inter-
vention to improve insight and emotional well-being.
Acknowledgments This study was approved by the Research and
Ethical Committees of Universiti Sains Malaysia and Hospital Raja
Perempuan Zainab.
References
1. UNAIDS. (2008). Report on the global AIDS epidemic. Geneva:
UNAIDS. http://www.unaids.org/en/KnowledgeCentre/HIVData/
GlobalReport/2008/2008_Global_report.asp.
2. World Health Statistics. (2008, July). Cited in WHO, UNAIDS
and UNICEF, Epidemiological Fact Sheet on HIV and AIDS,
Malaysia.
3. Malaysian AIDS Council and Malaysian AIDS Foundation
website. http://www.mac.org.my.
4. Murri, R., Fantoni, M., Borgo, C. D., Visona, R., Barracco, A.,
Zambelli, A., et al. (2003). Determinants of health-related quality
of life in HIV-infected patients. AIDS CARE, 15(4), 581–590.
5. Yen, C.-F., Tsai, J.-J., Lu, P.-L., Chen, Y.-H., Chen, T.-C., Chen,
P.-P., et al. (2004). Quality of life and its correlates in HIV/AIDS
male outpatients receiving highly active antiretroviral therapy in
Taiwan. Psychiatry and Clinical Neurosciences, 58, 501–506.
6. Call, S. A., Klapow, J. C., Stewart, K. E., Westfall, A. O., Mal-
linger, A. P., DeMasi, R. A., et al. (2000). Health-related quality
of life and virologic outcomes in an HIV clinic. Quality of Life
Research, 9, 977–985.
7. Peterman, A. H., Cella, D. F., Mo, F., & McCain, N. (1997).
Psychometric validation of the revised Functional Assessment of
Human Immunodeficiency Virus Infection (FAHI) quality of life
instrument. Quality of Life Research, 6, 572–584.
8. FACIT. http://www.facit.org.
9. Lim, C. H., & Ramli, H. (1996). The psychological impact of
rescue work on fire-fighters. Malaysian Journal of Psychiatry, 4,
66–77.
10. Hatta, S. M., & Abd Hamid, A. R. (1996). Anxiety symptoms
among post-abortion women. Malaysian Journal of Psychiatry, 4,
49–54.
11. Fariza, Y. (2003). Psychological distress, Anxiety and depression
among employees attending staff clinic in HUSM. Thesis M.MED
USM (unpublished).
123
100
12. Diamond, C., Taylor, T. H., & Anton-Culver, H. (2010). Quality
of life, characteristics and survival of patients with HIV and
lymphoma. Quality of Life Research, 19, 149–155.
13. Perez, I. R., Bafio, J. R., Lopez Ruz, M. A., del Jimenex, A.,
Prados, M. C., Liano, J. P., et al. (2005). Health-related quality of
life of patients with HIV: Impact of socio-demographic, clinical
and psychosocial factors. Quality of Life Research, 14,
1301–1310.
14. Wu, A. W., Revicki, D. A., Jacobson, D., & Malitz, F. E. (1997).
Evidence for reliability, validity and usefulness of the Medical
Out-comes Study HIV Health Survey (MOS-HIV). Quality of
Life Research, 6, 481–493.
15. Edwin, W., Francis, V. L., Dingie, V. R., & Herman, M. (2009).
Community support and disclosure of HIV sero-status to family
members by public sector antiretroviral treatment patients in the
Free State province of South Africa. AIDS Patient Care and
STDS, 23(5), 357–364.
16. Marzieh, N., Khatereh, A., & Mitrar, R. (2008). Health related
quality of Life in patients with HIV/AIDS. Archives of Iranian
Medicine, 11(6), 608–612.
17. Rao, D., Hahn, E., Cella, D., Hernandez, G., & Shimoto, G.
(2007). The health related quality of life outcomes of English and
Spanish speaking persons living with HIV/AIDS from the Con-
tinental United States and Puerto Rico. AIDS Patient Care and
STDs, 21(5), 339–346.
18. Chesney, M. A., Chambers, D. B., Taylor, J. M., & Johnson, L.
M. (2003). Social support, distress, and well-being in older men
living with HIV infection. Journal of Acquired Immune Defi-
ciency Syndromes, 33(2), 185–193.
19. Honiden, S., Sundaram, V., Nease, R. F., Holodniy, M., Lazze-
roni, L. C., Zolopa, A., et al. (2006). The effect of diagnosis with
123
Qual Life Res (2011) 20:91–100
HIV infection on health-related quality of life. Quality of Life
Research, 15(1), 69–82.
20. Carolyn, E. S., & Bruce, D. R. (2004). Reconsidering the psycho-
metrics of quality of life assessment in light of response shift and
appraisal. Health Quality of Life Outcomes, 2,16 (http://www.
hqlo.com/content/2/1/16) (date surfed: March 14, 2010).
21. Campsmith, M. L., Nakashima, A. K., & Davidson, A. J. (2003).
Self reported health-related quality of life in persons with HIV
infection: Results from a multisite interview project. Health and
Quality of Life Outcomes, 1, 12.
22. Jia, H., Uphold, C., Wu, S., Chen, J., & Duncan, P. (2005).
Predictors of changes in health-related quality of life among men
with HIV Infection in the HAART era. AIDS Patient Care STDs,
19, 395–405.
23. Gill, C. J., Griffith, J. L., & Jacobson, D. (2002). Relationship of
viral loads, CD4 count and HAART use to HRQOL. Journal of
AIDS, 30, 485–492.
24. Reiche, E. M. V., Nunes, S. O. V., & Morinmoto, H. K. (2004).
Stress, depression, the immune system, and cancer. Lancet
Oncology, 5(10), 617–625.
25. Lutgendorf, S. K., Sood, A. K., Anderson, B., et al. (2005). Social
support, psychological distress, and natural killer cell activity in
ovarian cancer. Journal of Clinical Oncology, 23(28),
7105–7113.
26. Elliot, A. J., Russo, J., & Roy-Byme, P. P. (2002). The effect of
changes in depression on health related quality of life (HRQoL)
in HIV infection. General Hospital Psychiatry, 24, 43–47.
27. Clayson, D. J., Wild, D. J., Quarterman, P., Duprat-Lommon, I.,
Kubin, M., & Coons, S. J. (2006). A comparative review of health
related quality of life measures for use in HIV/AIDS clinical
trials. Pharmacoeconomics, 24(8), 751–765.
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