|Year : 2018 | Volume
| Issue : 2 | Page : 208-213
Assessment of quality of life among human immunodeficiency virus/Acquired immuno deficiency syndrome patients: A study at antiretroviral therapy center at Malda, West Bengal, India
Pallabi Dasgupta1, Sujishnu Mukhopadhyay2, Debashis Saha3
1 Institute of Public Health, Kalyani, West Bengal, India
2 Department of Community Medicine, Malda Medical College and Hospital, Malda, West Bengal, India
3 Department of Community Medicine, Jagannath Gupta Institute of Medical Sciences and Hospital, Kolkata, West Bengal, India
|Date of Web Publication||27-Dec-2018|
Dr. Debashis Saha
Department of Community Medicine, Jagannath Gupta Institute of Medical Sciences and Hospital, KP Mondal Road, Buita, Budge Budge, Kolkata - 700 137, West Bengal
Source of Support: None, Conflict of Interest: None
Background: With availability of free of cost antiretroviral therapy (ART) in India, longevity of the disease has improved. However, owing to lifelong treatment, opportunistic infections and ultimate fatal outcome and quality of life (QOL) of human immunodeficiency virus/acquired immuno deficiency syndrome (HIV/AIDS) patients have emerged as a significant medical outcome measure in recent times. Objective: The present study was conducted to assess the QOL and associated factors among HIV/AIDS patients attending Malda Medical College ART Center in Malda, West Bengal. Materials and Methods: A cross-sectional study was conducted from September to December 2017 among 155 patients ≥18 years, attending the ART Center of Malda Medical college. Participants were interviewed using a validated Bengali version of the World Health Organization QOL (WHO-QOL BREF). Median scores were calculated in each domain. Mann–Whitney U-test was used to find associated factors. Results: Majority of the patients perceived their QOL and health as good. Median scores of QOL of patients were maximum in physical (69 ) and environmental (63 ) domains; minimum in psychological (56 ) and social (56 ) domains. Current illness significantly affected physical and social domains. Current unemployment significantly affected physical and psychological domains. Married persons had significantly higher scores in social domain. Lesser age and lower socioeconomic status had significantly lower QOL in the environmental domain. Conclusion: The present findings highlight the need for suitable employment opportunities for HIV-infected persons to improve social health. Enhanced sociopsychological supports such as social sensitization, mental health care of patients, and interventions to reduce stigma should be done.
Keywords: Human immunodeficiency virus/acquired immuno deficiency syndrome, India, quality of life, World Health Organization-quality of life-BREF
|How to cite this article:|
Dasgupta P, Mukhopadhyay S, Saha D. Assessment of quality of life among human immunodeficiency virus/Acquired immuno deficiency syndrome patients: A study at antiretroviral therapy center at Malda, West Bengal, India. Arch Med Health Sci 2018;6:208-13
|How to cite this URL:|
Dasgupta P, Mukhopadhyay S, Saha D. Assessment of quality of life among human immunodeficiency virus/Acquired immuno deficiency syndrome patients: A study at antiretroviral therapy center at Malda, West Bengal, India. Arch Med Health Sci [serial online] 2018 [cited 2019 Oct 17];6:208-13. Available from: http://www.amhsjournal.org/text.asp?2018/6/2/208/248651
| Introduction|| |
Acquired immuno deficiency syndrome (AIDS) is a syndrome caused by a virus called human immunodeficiency virus (HIV). Globally 36.7 million people are living with HIV at the end of 2016. An estimated 0.8% adults aged 15–49 years worldwide are living with HIV although the burden of the epidemic continues to be considerable between countries and regions. In India, an estimated 2.1 million people living with HIV (2015) with the prevalence of 0.26% of adult population. According to recent National AIDS Control Organization data, India had demonstrated an overall reduction of 57% in estimated annual new HIV infections from 0.24 million in 2000 to 0.16 million in 2011.
The disease AIDS caused by HIV is a disease marked by its fatality. It affects the immune system while attacking the T-helper/CD4 cell it gradually breaks down a person's immune system finally leading to various opportunistic infections and death. However, it does not happen overnight. It takes 7–10 years for the immune system to get completely exhausted. The patient must bear with the burden of the disease all these years.
The introduction of highly active antiretroviral therapy (ART) to alleviate the symptoms of these patients by the government has increased the lifespan of HIV-infected patients. These drugs have been a great success in making these persons lead a life that is socially and economically more productive. The drugs are provided free of cost from the government hospitals and patients are required to collect those from there.
With the recent advantages in clinical tests and treatments for those suffering from AIDS, the survival of these patients has been increased. Given the longevity achievable for persons with HIV infection, quality of life (QOL) has emerged as a significant medical outcome measure and its enhancement has an important goal. QOL is a term that is popularly used to convey an overall sense of well-being and includes aspect such as happiness and satisfaction with life. The World Health Organization (WHO) has defined QOL as individuals' perception of their position in life in the context of the culture and value systems in which they live and relation to their goals, standard, expectations and concerns. Findings among the general population have shown significant differences in QOL with those in poor health than those with better health.
The second objective of National AIDS Control Program Phase-4 of India aims to provide comprehensive care to people living with HIV/AIDS (PLHIV). Improving QOL is in line with providing comprehensive care. Various published research is available around the globe focusing on QOL among HIV/AIDS patients such as in Bangladesh and China. Such studies are very few in the context of India, more so in West Bengal. There are no studies conducted in Malda, West Bengal, though it is vulnerable to infiltrate from neighboring districts, states (Bihar and Jharkhand), even countries like Bangladesh due to its geographical position. Hence, this studies would give us insight about this disease in this current context. With this background, the present study was conducted to assess the QOL and associated factors among patients attending Malda Medical College ART center in Malda, West Bengal.
| Materials and Methods|| |
A facility-based, descriptive, cross-sectional study was conducted from September to December 2017 in Malda. District of Malda, belongs to the northern part of West Bengal a state in eastern India, is unique in its location. It is surrounded by the state of Jharkhand and neighboring country Bangladesh which makes economically, culturally, and politically different from rest of the West Bengal. Malda Medical College possesses the only ART Center in the area.
From all registered PLHIV in Malda Medical College ART Center, patients aged ≥18 years, were included by systematic random sampling. Patients with serious illness (who were too ill to participate interview and require hospitalization) were excluded from the study.
Sample size was calculated to be 156, considering a 95% confidence level, mean score of QOL as 9.7, standard deviation as 2.4 (from a study in Orissa), 5% relative precision, design effect of 1.5, and additional 10% nonresponse rate.
Participants were interviewed using a predesigned, semi-structured interview schedule consisting of background characteristics, disease-related variables, and a validated Bengali version of WHOQOL BREF. Background variables included age (in completed years), gender (male/female/others), religion (Hindu/Muslim/others), type of family (joint/nuclear), education (<5 years and 5 years or more years of schooling), occupation at present (employed/unemployed), and socioeconomic status (SES) using modified BG Prasad scale. Disease-related variables included duration of the disease (in completed years), additional family member affected, and current illness. Available records of ART center like patient treatment cards, etc., were also used for data collection.
WHOQOL BREF questionnaire consisting of 26 questions, 2 questions related to global perception of QOL and health and 24 questions related to four domains of QOL, namely, physical, social, psychological, and environmental. Items are rated on a 5-point Likert interval scale where 1 indicates poor perceptions and 5 indicates better perceptions. The mean score of items within each domain is used to calculate the domain score. Mean scores are then multiplied by 4 in order to make domain scores comparable with the scores used in the WHOQOL-100. The scores against these 26 questions were calculated as a raw score first based on responses then transformed to domain scores in a scale of 0–100 with poorer scores indicating poorer QOL and higher scores indicating better QOL.
After obtaining ethical clearance from the institutional ethics committee and permission from the concerned authorities at ART Center, the participants were interviewed during the outpatient department hours from Monday to Saturday for a period of about 3 weeks. On an average, nearly 40–45 patients attend the clinic daily for receiving ART. Each of those registered patients, usually visits the center once in a month to receive ART. Every fifth patient attending the center was approached on a day until eligibility criteria and required sample size were met. One researcher interviewed all the patients to maintain uniformity of the interview process. Informed consent was obtained from each of them. Anonymity and confidentiality of the information was maintained.
Based on data characteristics, median and interquartile range was calculated for the transformed scores in each domain. Mann–Whitney U-test was used to find differences in scores across groups of background and disease-related variables. Data were graphically presented by bar chart and box plots as appropriate. The analysis was performed with IBM SPSS version 20.0 (IBM Corp., Armonk, NY, USA). P < 0.05 was considered statistically significant.
| Results|| |
Out of 2640 registered ART patients, 156 eligible participants were approached. However, 155 could be successfully interviewed. One of them refused to respond. The mean age of the participants was 37.2 ± 10.3 years (range, 18–69) with 88 males (56.8%), 103 Hindus (66.5%), and 110 married (71.0%). Participants with ≥5 years of schooling numbered 87 (56.1%), with 106 (68.4%) from nuclear families, 104 (67.1%) belonging to lower SES (monthly PCI <1952 Indian rupees), and 17 (11.0%) were currently unemployed [Table 1]. Out of the employed, 17 had to change occupation due to disease.
|Table 1: Domain-wise scores of the patients based on background characteristics (n=155)|
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Out of the participants, 119 (76.8%) had a disease duration of ≤5 year, 80 (51.6%) had other family members with HIV/AIDS, and 46 (29.7%) were currently ill. Currently ill includes fever, cough, cold, vertigo, and skin diseases [Table 2].
|Table 2: Domain-wise scores of the patients based on their disease-related characteristics (n=155)|
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Majority of the participants perceived their QOL (78, 50.3%) and health status (82, 52.9%) as good and about 40 (25.8%) perceived their QOL as poor and 52 (33.5%) thought their health was poor [Figure 1]. Median domain-wise scores of QOL of participants were 69 (25) in physical domain; 56 (19) in psychological domain; 56 (31) in social domain, and 63 (19) in environmental domain [Figure 2].
|Figure 1: Self-perception regarding the quality of life and health of participants (n = 155)|
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|Figure 2: Box and Whisker plot showing domain-wise quality of life scores of participants n = 155|
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In the physical domain, lesser age, female gender, lesser education, Muslim religion, nuclear family, higher SES, >5 years of disease, and not having additional infected member had lower QOL scores. Scores were similar irrespective of marital status. In the psychological domain, lesser age, female gender, joint family, currently ill, and not having additional infected member had lower QOL scores. Education, marital status, religion, SES, and duration of disease had similar scores in different groups. In the social domain, most of the parameters had similar scores except being presently unemployed having lower QOL. Females, married, Muslim religion, nuclear family, currently unemployed, more than 5 years of disease, being currently ill, had lower scores in environmental domain. However, none of these associations were significant.
Being currently ill had significant lower scores in physical domain. Being currently unemployed had significant lower scores in physical and psychological domains. Married persons had significantly higher scores in social domain. Being currently ill and having additional HIV-infected family member had significantly lower QOL scores in social domain. Lesser age and lower SES had significantly lower QOL in environmental domain [Table 1] and [Table 2].
| Discussion|| |
HIV/AIDS have multifaceted and deep effects upon different aspects of life. Evaluation of QOL becomes important considering the chronicity and stigma of the disease which affects the patients socially and psychologically. In general, domain-wise QOL scores in the present study were lower from the normal population scores attained from findings by Hawthorne et al.
From the result, it was seen that in physical domain those who were ill at the time of interview and unemployment, in psychological domain unemployment, in social domain marital status, and in environmental domain age >30 years and better SES played significantly better role in QOL score.
The maximum QOL scores among the patients were obtained in physical and environmental domains. This suggests that the patients had relatively better quality of health services and good accessibility to them. Social and psychological domains were, however, badly affected indicating poor self-esteem, social contacts, and sexual activity. Overall scores were higher than findings from South India, where like present findings, minimum scores were obtained for social domain. Psychological domain was also the worst affected in findings by Marashi et al. in Delhi. Poor social,, and psychological domain, was observed globally elsewhere.
The present study has tried to assess the various background and disease-related factors which might affect QOL in HIV/AIDS-infected persons.
Persons aged more than 30 years scored better in all domains like the WHOQOL-HIV pilot study report. Older persons (>30) had lower negative feelings, and better social inclusion, spiritual connection, forgiveness, and spiritual experience than younger persons. Significant association between age and QOL was found in India and Georgia. Some other studies reported younger persons reporting better QOL., In a traditional family structure, younger members are the working group who provide care and financial support to the family. The diseased state might have affected their environmental domain.
Married persons had significantly better social QOL than widowed, divorced, or unmarried counterparts. Physical and psychological domain scores were similar irrespective of marital status. Findings are varied from other studies. Single persons had significantly better scores in all domains than those ever-married in China. No association between QOL scores and marital status was reported by Starance et al., Kohli et al., and Bray et al. Findings from Zimbabwe and Iran were consistent with present study. Being single or separated already has social stigma attached to it in this area. Additional HIV-infected state leads to more discrimination. Moreover, physical, emotional, and social support the married received from their partners might lead to improved QOL. Support from sources outside the family cannot compensate for what is missing in the family.
Higher socioeconomic status has been associated with improved QOL in various studies.,, In India, ART drugs are provided free of cost. However, a study by Shukla et al. reveals catastrophic out-of-pocket expenditure incurred in about one-fifth patients attending ART centers in North India significantly more for lower socioeconomic class. This makes economically backward patients more prone to poor QOL in environmental domain.
In the present study, unemployment significantly affected physical and psychological domain of the participants and showed poor scores in social domain. Various studies found significant associations between employment and QOL.,, HIV-infected persons often must adapt themselves to unpredictable disease course, which might lead to change of employment or remaining unemployed. Those who do work often find their occupational functioning limited by HIV-specific factors such as episodic illness, fatigue, physical and cognitive limitations, medication schedules and side effects, and frequent medical appointments. Probably, some of the study participants had to remain jobless owing to their disease condition gaining toll on their physical health.
Unemployed individuals generally report more depression, anxiety, social isolation, and low self-esteem than employed individuals. Employment makes an individual financially independent and serves as a social security, role identity, and gives personal meaning. Having a source of income was associated with a better QOL in the physical and psychological domains in Brazil.
State of illness
HIV-infected persons must cope with a range of HIV-related symptoms for extended periods. Symptoms may be related to the infection itself, comorbid illnesses, or iatrogenic effects from medications. Such illness affecting physical domain could be due to fatigue, pain, and decreased working capacity affecting daily activities in the present study. CD4 count could be taken as a proxy measure of disease state, with higher CD4 count implying better health situation. Earlier studies, depicted increase in CD4 count to positively affect physical domain.
Additional infected family member
Often disease situation leads to avoidance coping strategies, such as withdrawal and conflictual social interactions. Patients might not disclose the actual infection status initially till the HIV-related symptoms appear. Hence, ill state leads to poor personal and social functioning. Having additional HIV-infected member in the family might also lead to social discrimination leading to poor social domain scores.
Other factors such as gender, education, type of family, and duration of disease were not significantly associated in the present study. Females reported poorer QOL like other studies.,, Higher education has more positive attitude toward the disease with the increasing awareness level might lead to improved QOL.,,, Duration of disease has no significant effect on QOL rather accepting ART and drug adherence, is more important. Joint family support influenced the scores of physical and environmental domains, which implies that a good supportive family helps to keep the patient's environment healthier., However, probable stigmatization within a joint family due to revealing of status to other members might have led to poor psychological scores. There is lack of literature to support this finding.
The current study proclaims to be unique that it is the very first of its kind to be conducted in the area. The domains were based on previous 2 weeks experiences only. Baseline QOL was not assessed here within limitations of cross-sectional study. Interpretations of findings should be made considering these issues.
| Conclusion|| |
The present findings highlight the need for suitable employment opportunities for HIV-infected persons considering their functional capacities. Employment and financial security would lead to improve social health. There is a need for enhanced sociopsychological support and better environment. Interventions to address the stigma like social sensitization at level of family and community and mental health care of the PLHIV should be done thus focusing aspects of HIV beyond clinical care. Avoiding stigma and discrimination may help to create a sense of safe living conditions or help PLHIV to receive a necessary support from their community. It is recommended to attempt further studies in considering all possible predictors of QOL in PLHIV.
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Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2]