Quality of life among people living with HIV/AIDS receiving highly active anti-retroviral therapy: A domain-based analysis

Yasir Alvi; Najam Khalique; Anees Ahmad; Mohammad Salman Shah; Nafis Faizi

doi:10.4103/IJCFM.IJCFM_6_20

ORIGINAL ARTICLE

Year : 2020 | Volume : 6 | Issue : 2 | Page : 125-131

Quality of life among people living with HIV/AIDS receiving highly active anti-retroviral therapy: A domain-based analysis

Yasir Alvi¹, Najam Khalique², Anees Ahmad², Mohammad Salman Shah², Nafis Faizi²
¹ Department of Community Medicine, Hamdard Institute of Medical Sciences and Research, Hamdard University, New Delhi, India
² Department of Community Medicine, Jawaharlal Nehru Medical College and Hospital, Aligarh Muslim University, Aligarh, Uttar Pradesh, India

Date of Submission	17-Jan-2020
Date of Decision	24-Feb-2020
Date of Acceptance	10-Oct-2020
Date of Web Publication	24-Dec-2020

Correspondence Address:
Prof. Najam Khalique
Department of Community Medicine, Jawaharlal Nehru Medical College, Aligarh Muslim University, Aligarh - 202 002, Uttar Pradesh
India

Source of Support: None, Conflict of Interest: None

DOI: 10.4103/IJCFM.IJCFM_6_20

Abstract

Introduction: With the highly effective antiretroviral treatment, HIV is transforming into a chronic condition, whose management is now experiencing problems of other chronic diseases, where quality of life (QoL) plays a central role. This study was conducted with the objective of determining the QoL among people living with HIV/AIDS (PLHA) taking Anti-Retroviral Therapy (ART) and examine the factors affecting it.
Material and Methods: A cross-sectional study was conducted at ART center, Aligarh. 434 PLHA on antiretroviral therapy, were interviewed using a pretested questionnaire, assessing QoL with the World Health Organization (WHOQoL) HIV-BREF. For domain-based analysis, we examined the association of various factors with the individual domain. The P < 0.05 was considered statistically significant.
Results: The mean score in all the domains of WHOQoL was maximum for the level of independence (15.7 ± 2.6) followed by the physical domain (15.5 ± 3.0), while environment domain (11.7 ± 1.8) had the least mean. All the domains, including overall QoL scored above average QoL. This study also showed that a strong relationship exists between QoL with lower socioeconomic status, presence of side effects from ART and depression.
Conclusion: The QoL of HIV patients taking ART from Aligarh was adequate, reflecting the efforts of NACO and other agencies in managing the disease. With respect to its determinants, providing good family support, better employment opportunities, reducing stigma, and proper and timely management of side effects and depression could further increase levels of QoL.

Keywords: Antiretroviral therapy, HIV/AIDS, people living with HIV/AIDS, quality of life, World Health Organization quality of life

How to cite this article:
Alvi Y, Khalique N, Ahmad A, Shah MS, Faizi N. Quality of life among people living with HIV/AIDS receiving highly active anti-retroviral therapy: A domain-based analysis. Indian J Community Fam Med 2020;6:125-31

How to cite this URL:
Alvi Y, Khalique N, Ahmad A, Shah MS, Faizi N. Quality of life among people living with HIV/AIDS receiving highly active anti-retroviral therapy: A domain-based analysis. Indian J Community Fam Med [serial online] 2020 [cited 2022 Jul 2];6:125-31. Available from: https://www.ijcfm.org/text.asp?2020/6/2/125/304798

Introduction

With the adoption of test and treat policy in 2017, Government of India strengthened its strategy of controlling the HIV/AIDS by extending provision of treatment to each and every person with HIV, irrespective of their clinical stage or immunity.^[1] In pursuit to ending the AIDS epidemic by extending care, support and treatment to all the People Living with HIV/AIDS (PLHA), this was based on the recommendations of the Joint United Nations Programme on HIV and AIDS. This universal access to comprehensive care aims to further strengthen the fight against AIDS. Despite the absence of cure for the disease, the Highly Active Antiretroviral Therapy (HAART) has transformed HIV/AIDS management, increasing life expectancy and survival of the patients like any other chronic disease, requiring a long-term care.^[2] However, it remains to be seen whether this has successfully transformed the Quality of Life (QoL) of PLHA or not. While extension of HAART provisioning is laudable, due attention to QoL will further enhance the HIV/AIDS care that PLHA deserve.

The WHO defines QoL as “individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.” Comprehensive care with support and treatment as the program envisions, should be efficient in improving the health status of PLHA. The advancement of QoL depends on multiple factors such as patients clinical condition and treatment as well as demographic and social-economic conditions. However, conflicting findings have been reported in many of these QoL related factors in different populations.^{[3],[4],[5],[6],[7],[8],[9]} While all these studies document some improvement in QoL with treatment, side effect from these long term use of drugs have been a deterrent in some cases.^[10],[11] With limited literature on QoL and its relation to treatment, especially from North India, we conducted this study to measure QoL among PLHA receiving anti-retroviral therapy (ART) and examine the factors affecting it.

Methods

Study design, setting and sample size

A cross-sectional study over a period of 12 months was conducted at ART centre, Jawaharlal Nehru Medical College, Aligarh. All adult HIV/AIDS patients registered to the ART center were eligible. Inclusion criteria were all adult PLHA (>18 years) taking ART for >6 months from the selected ART center. We excluded patients with (1) acute medical condition during the study, (2) any past, present or family history of a psychiatric condition, and (3) any bereavement or significant loss of property or sickness/death of any close relatives within the past 3 months.

The sample size was calculated taking the expected confidence interval (σ) and mean from a previous study,^[4] with 95% confidence level and within variability (ε) of 3% of expected mean (μ). It was calculated as 440, using the equation for calculation of sample size for continuous response variables, n = z²σ²/ε²μ².^[12] The eligible population was sampled by systematic random sampling, preparing sampling frame from the list of the patients coming to ART center on the day of data collection, which was done thrice a week. Considering total study population (2323), data collection visits and average daily attendances at ART center (≈50), the sampling interval was calculated to be 10. The first sample was chosen randomly and every tenth patient in the sampling frame was selected.

Study instruments

We conducted face-to-face interview using a predesigned and pretested questionnaire administered in the local language (Hindi), recording information regarding selected socio-demographics, clinical and social factors. QoL was measured by the World Health Organization (WHOQoL) HIV-BREF questionnaire, which is 31-item self-reported questionnaire having 29 specific facets covering six domains -physical, psychological, independence, social relationships, environment, and spiritual, religion and personal beliefs (SRPBs); and two facets for global QoL and general health.^[13] Physical domain has facets which measure pain, discomfort, fatigue and symptoms from the disease. Psychological domain measures how a person feels and thinks along with their self-esteem. Level of independence domain has multiple facets measuring mobility, daily activity, drug dependence and work capacity. Social relationships reflect personal relationships, social support and sexual activity. Environment domain includes factors relating to physical safety and security, home and work environment and transportation, while SRPB domain includes factors-related religiousness, belief and suicidal tendency. The patients were asked to focus on their experiences in the past 2 weeks. The facets scored from 1 to 5, with a higher score indicating a better QoL.^[13] To compare different domains with each other, the scores of all the domains were transformed to reflect a 4–20 scale by multiplying the average scores for all facets in the domain by 4. Overall QoL was estimated by averaging of all domains. A score of 4–9.9 was treated as low, 10–14.9 as satisfactory and 15 or more as good level of QoL. Physical Health Questionnaire-9 (PHQ-9) was used to screen and diagnose depression. The PHQ-9 consists of nine measures based on the criteria for the diagnosis of depressive disorders according to the Diagnostic and Statistical Manual of Mental Disorders (DSM)-IV.^[14]

Data management and statistics

The data were entered and analyzed using the IBM Statistical Package for the Social Sciences version 20 (SPSS Inc., Armonk, NY, USA). Descriptive statistics were presented as mean and standard deviations in continuous variables and percentages/proportions in qualitative variables along with their 95% confidence intervals. Statistical significance was tested by the Spearman's rank correlation, unpaired t-test for two independent variables, and analysis of variance for more than two independent variables. If applicable, Tukey's honest significance difference test was used as post hoc test. A value of P ≤ 0.05 was considered significant.

Ethics

The study was part of MD thesis, submitted in 2017 and was approved by the Institutional Ethics and Research Advisory Committee, JN Medical College, Aligarh. All patients gave written informed consent. Before the start of interview, individual rapport-building sessions were held explaining the purpose of the research and its implications and ensuring confidentiality. Appropriate health education, counseling and appropriate referral was provided to all the patients after the interview.

Results

During the study period, 440 patients were interviewed, of which six patients did not complete the interview. Thus the final analysis was done on 434 sample.

Sociodemographic and clinical characteristics

We interviewed a total of 434 patients (262 males, 170 females and 2 transgender) during the study period. Mean age was 39.02 ± 9.82 years. Majority of them were married (65.4%), lived in a rural area (73.7%) and in a nuclear family (62.7%). Only about two-third patients were literate, and the same number were employed. About two-third participants (66.4%) belonged to the lower socialeconomical class. Most of the participants (249/434) were asymptomatic (WHO staging I), with a mean CD4 cell count of 384.57 ± 179.54 mm³. Side effects from antiretroviral were reported by 18.7% of the participants during the previous 30 days [Table 1].

Table 1: Sociodemographic characteristics of the HIV/AIDS patients taking Antiretroviral therapy

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Quality of life in different domains

The mean scores in the six domains of QoL were maximum for the level of independence (15.7 ± 2.6) followed by the physical domain (15.5 ± 3.0), while environment domain (11.7 ± 1.8) had the least mean. Other domains were psychological (14.6 ± 2.0), social relationship (13.0 ± 2.9) and SRPB domain (13.1 ± 2.8). All the domains, including overall QoL scored better than previous studies, showing an above-average QoL of PLHA from Aligarh [Figure 1]. Domain-based analysis of the WHOQoL showed an adequate internal consistency (Cronbach's α = 0.660) and moderate-to-strong positive correlation (r = 0.307–0.756) among all the domains except social relationship, which had mild to no correlation with other domain scores. [Table 2] shows the distribution of QoL scores across various factors of HIV/AIDS patients.

Figure 1: Boxplot of World Health Organization quality of life HIV-BREF domains

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Table 2: Distribution of scores of quality of life domains across various social-economic and clinical factors

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Discussion

We observed in our study that the PLHA from Aligarh were having adequate to a good level of QoL. These scores are higher in comparison with studies from Nepal and Bangladesh, as well as other parts of India.^{[3],[4],[5],[15],[16],[17]} However, recent studies from South India and West Bengal have also observed a good level of QoL.^[6],[18] In terms of QoL, these findings convey an encouraging message for the HIV care, support and treatment under NACP. The free provisioning of drugs with physician consultations from the ART Centres established in almost all of the districts in India may have contributed to better QoL. In our domain-based analysis, we observed there is a need for more attention toward environment and social relationship domain as compared with other domains. Out of six domains, physical and level of independence had higher scores, while the scores of psychological, social relationship, environment and spiritual domain were lower, but within the adequate level of QoL. The internal consistency between the six domains were found to be adequate, with a moderate-to-high correlation among themselves, except the social domain.

The poor QoL was observed among participant belonging to the rural area, who had poor transport facilities, which is consistent with many reports.^[4],[17] A significant relationship was found between socioeconomic status, literacy and employment with the QoL domains. A poor score of QoL domain was observed in patients belonging to a lower socioeconomic class, who were illiterate and unemployed. This finding is consistent with previous researches.^{[15],[17],[19],[20],[21],[22]} We observed that lower socioeconomic status was associated with poorer QoL in all domains, with the exception of spirituality, while employment status was seen having an effect in psychological, independence and environment domain. These findings highlight the need to improve the overall social and economic status, by providing employment opportunities, social security and financial assistance to PLHA. HIV/AIDS is an important hurdle in finding employment, on the other hand, being employed act as a positive enforcement of usefulness for the individual.^[22] Literate patients, apart from better job opportunities, have better attitude toward the disease understanding, its prevention and management, and have a better comprehend to compliance and side effects– which was also found to be an important determinant of poor QoL in our study. Although contrarily to our finding of positive relation of literacy and QOL, which is also observed in others studies,[15],[21],[23] a study from West Bengal and from Ghana, observed no relationship, while Nigerians PLHA showed higher QoL with no or primary education.^[6],[8],[11]

The social domain related findings in our study is along the lines of previous studies from South India,^[23],[24] and other developing countries including Nigeria, China, and Brazil.^{[11],[20],[25]} The relatively poorer social domain reflects the persistence of social isolation, stigmatization and marginalization of PLHA leading to a poor social relationships. While this has improved from previous studies, it still needs to be addressed.^[3],[15] We observed a significant association between dissatisfaction from family support and social domain– which has been documented in previous studies.^[5],[26] Contrary to our expectation and previous research,^[22],[27] presence of social support was not found to be an important determinant of QoL in our study setting, as it was associated only with environment domain. A good and supportive family environment would help the patient feel better and have healthy personal relationships and daily activity, and peer and social support groups may mitigate psychosocial consequences.^[26] The studies have observed perceived stigma predicts a poor QoL,^[4],[9],[28]which was also documented in our study population. Thus interventions designed to decrease felt stigma and strengthen positive enforcement against discrimination would improve QoL.

The environment domain had the least score in our study. This is presumably due to the sociodemographic characteristics of the study population as most of the patients belonged to lower socioeconomic class and were unemployed. On top of that, many had to traverse a long distance to collect their monthly supply of antiretroviral medications. The environmental domain had the lowest score in another study from New Delhi.^[5] We observed environment domain to be significantly lower in females, unmarried, patients from rural areas who have to travel large distances, illiterate and unemployed with lower socioeconomic status, presence of side effects, dissatisfaction from family, social support as well as services. A study from South India has shown female to have a lower mean of QoL in all domain,^[23] while few international studies have documented better QoL in female HIV patients.^[16],[17]

Most patients in our study were stable, asymptomatic and on long-term treatment, with minimal side effects affecting their daily activity. This is the reason why the physical domain-largely associated with clinical factors, and the domain related to the level of independence were found to have a good score. However, while the physical domains were least affected by sociodemographic factors; higher age, lower socioeconomic status, unemployment along with clinical factors affected the independence domain. While, the psychological domains had satisfactory levels, the SRPB domain had a lower score with further worsening in those reporting higher felt stigma and depression. This is another arena that needs attention. We observed that older patients had significantly better QoL in a spiritual domain. Studies done elsewhere have also observed younger age to be associated with poor QoL.^[4],[11] As older patients may be on treatment for long, they may have better cope up with their condition, highlighted by a higher score in QoL, especially in the spiritual domain. Among the clinical factors, similar to previous findings, we found side effects from ART and presence of depression to be significantly effecting all the domains of QoL except for social relationship.^[10] These two factors along with low socioeconomic status, were the most important determinants of QoL in our study. Although severity of the side effects has drastically reduced in newer drugs,^[29] we inferred from our finding that even mild side effects hamper QoL of patients and should not be ignored. The QoL in HIV patients was adversely affected by the concurrent presence of depression which is consistent with several other studies in different part of the world.^{[20],[22],[30],[31]} Apart from the environmental domain, the presence of depression among HIV/AIDS patients was highly associated with all domains of WHOQoL HIV-BREF. A study from South India found depression to be the strongest negative predictor of the QoL, while another observer those with lack of/mild symptoms of depression experiences 4.91 times good QoL.^[10],[18] While a high prevalence of depression is enough to incorporate mental healthcare with screening, improving the access to effective depression management might provide an opportunity to raise QoL as well. It was expected that HIV symptoms would adverse QoL of HIV patient, which was confirmed in our study as symptomatic patients had poor QoL in physical, psychological, independence and spiritual domain. These findings support a study from Iran which observed the clinical stage of the disease to be the strongest predictor of QoL in multivariate analysis.^[19] While a study from Uttar Pradesh has reported an inverse relationship between different stages of HIV infection with all six domains, it was significant only in Psychological and independence among PLHA from Nepal and with overall QoL in Ghana.^{[8],[16],[32]} Similarly, we found lower CD4 counts to be associated with physical and level of independence, which has been reported in the literature to affect one or more domains of QoL.^{[7],[11],[16],[20],[23],[25]} Some of the literature in this is contradictory. It may be due to the different classification of CD4 groups, deferring population as well as different assessment instruments, thereby limiting comparisons between results.^[5],[33] All these reinforce the importance to comprehensive care support and treatment of PLHA which are now incorporated in test and treat Policy of NACO.^[1] Contrary to previous literature,^[7],[25] we did not find significant association of years of diagnosis and domains of QoL except spiritual domain.

There were a few limitations in our study. The present study was a cross-sectional study based in a hospital setting. As QoL is a dynamic phenomenon and not a constant state, it cannot be assessed in a cross-sectional study. We also refrain from making any causal associations, as the temporality cannot be ascertained, a prospective study needs to be conducted to confirm the findings of this study. It was not a community-based study, opening the gates of selection bias, although most of the PLHA in India avail treatment from these ART centers. Furthermore, we have included the PLHA who were on treatment, that too for > 6 months, which might have excluded a lot of patients, although they are unlikely to be a chronically managed patient, in whom we wanted to observe the QoL. Finally, there might be a limitation of recall biased as the WHOQoL HIV-BREF instrument measures QoL within 4 weeks before the interview.

Conclusion

An important contribution of this study to the literature is that the QoL of HIV patients is improving. This was possible because of the long and steady efforts of NACO, and other agencies in managing the HIV/AIDS problem. This study also showed that a significant relationship exists between QoL with sociodemographic variables, economic and clinical factors. In this respect, patients belonging to lower socioeconomic class, having side effects due to ART and presence of depression were found to be the most important in lowering the QoL of the PLHA. In addition, providing good family support, better employment opportunities and reducing stigma could increase levels of QoL of PLHA.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

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