Assessment of Quality of Life among HIV Positive People Attending Tertiary Hospital of Delhi, India

Transcription

1 J. Commun. Dis. 41 (2) 2009 : Assessment of Quality of Life among HIV Positive People Attending Tertiary Hospital of Delhi, India Marashi T*, Garg S*, Gupta VK*, Singh MM*, Sinha Pragya*, Dewan R**, Ingle GK*, Jiloha RC*** Abstract As per global HIV/AIDS estimates, a total of 33 million [ million] People were living with HIV in The world's second-most populous country, India, is experiencing a highly varied HIV epidemic, which appears to be stable or diminishing in some parts while growing at a modest rate in others. Quality of life (QOL) of HIV/AIDS patients is becoming an important component of overall assessment of health care and management in health care settings. It is one of the indicators effectiveness of management of PLHAS. The objective of this study was to determine the QOL of patients with HIV/AIDS in New Delhi. Purposive sampling was used to identify subjects from the antiretroviral therapy clinic (ART) in Lok Nayak hospital. 180 patients were interviewed with the WHOQOL-HIV instrument. This questionnaire included demographic data, multi-item scales and six domains namely physical, psychological, level of independence, social relationships, environment and spirituality religion. Study subjects were aged between years. Mean age of all study subjects was 33.85±7.01 years, comprising of 34.4 females. More than 50% of the total subjects had received less than secondary school education. All domains have higher scores for women than men except the psychological domain. Correlation of scores of six domains with overall QOL score and among individual domains was statistically significant. Younger people showed poorer QOL and level of education correlated positively with all domains of QOL. Overall results indicate that quality of life of AIDS attending Lok Nayak hospital is satisfactory. Keywords : quality of life, HIV/AIDS * Department of Community Medicine, Maulana Azad Medical College, New Delhi, India ** Department of Medicine, Maulana Azad Medical College, New Delhi, India *** Department of Psychiatry, Maulana Azad Medical College, New Delhi, India Correspondence to : Dr. Marashi Tayabah, marashi142002@yahoo.com

2 102 Marashi T et al INTRODUCTION The HIV/AIDS pandemic is one of the most important and urgent public health challenges facing governments and civil 1 societies around the world. The HIV epidemic in India is best described as a series of epidemics widely varied with respect to prevalence levels, risk factors for infection and transmission patterns. As per last estimated a total of 2.4 million [1, 800, 000 3,, 200, 000]people were living with HIV in with national adult HIV prevalence of 0.36%. As per estimates 2.3 million [ million] Adults (15+) and 880,000 [670, 000 1, 200, 000] Women (15+). Although is this lower 3 than previously reported one. Reported adult HIV prevalence in six states included in the recent national population-based survey (the National Family Health Survey 3, conducted in ) varied from 0.07% in Uttar Pradesh, to 0.34% in Tamil Nadu, 0.62% in Maharashtra, 0.69% in Karnataka, 0.97% in Andhra Pradesh, and 1.13% in Manipur. Prevalence in all other states together was 0.13%. An earlier analysis of sentinel surveillance data also showed that overall HIV prevalence in southern states was about five times higher than in northern states in Out of total HIV infections, 38.4% were females, and 57% were in rural area. During this year, the contribution of HIV infection from STD population group has been found to be 1.7 million in comparison to million during With major advances in medical treatment, PLWHA are living longer and their quality of life (QOL) has become an important focus for researcher and 6,7,8 health care providers. Quality of life measures are increasingly used to supplement objective clinical or biological measures of disease to assess the quality of service, the need for health care, the effectiveness of interventions and in cost 9 utility analyses. Quality of life refers to a patient's perception that their current level of functioning is satisfactory. This construct is multifactorial in nature. QOL encompasses not only emotional well-being and functioning, but perceptions of physical well being (e.g., activity level, pain and general 10 health perceptions) as well. Quality of life (QOL) in persons living with HIV/ AIDS is a 11 salient issue in care and management. QOL assessment is currently considered essential for clinical trials development, as clinical and biological end point used during pharmacological trials are considered inadequate to catch the complexity of care 6 treatment outcomes. Considering the prevalence and spread of HIV in India and limited availability of treatment modalities it seems necessary to assess QOL in such population. This study was carried out to assess the quality of life of patients suffering from HIV/AIDS. MATERIALS AND METHODS Purposive sampling was used to identify subjects from the Antiretroviral therapy (ART) clinic in Lok Nayak Hospital. 180 patients were interviewed by a trained interviewer using WHOQOL-HIV questionnaire. The first three HIV/AIDS patients giving consent for the study were enrolled on each day. The WHOQOL-HIV questionnaire has 120 items (20 for HIV module) divided into domains (physical, psychological, level of independence, social relationship, environment, spirituality religion, personal belief) and 30 facets. Scoring for each item is given according to a Likert type scale (1 to 5). Moreover, there are four items for the

3 Assessment of Quality of Life among HIV Positive 103 assessment of overall quality of life and overall health status. Higher scores indicate better QOL, with the following exceptions: pain, negative feeling, dependence from therapies and all facts in the domain personal belief of PLWHA (forgiveness, spiritual connection, personal spiritual experience, death and dying) where score direction is inverted. Facets scores were calculated using the mean of the four items. Domain scores were calculated by summing the facets and dividing by the number of facet's in the domain. The result was then multiplied by 4 so that domain scores range from 4 (worst 12 possible QOL) to 20 (best possible QOL). WHOQOL- HIV includes 38 items assessing the importance of several basic features of QOL. Scoring these 38 items were done as follows: 1=not important, 2=a little important, 3=moderately important, 4=very important, 5 =extremely important. Data on socio-demographic information such as: age, sex, marital status, literacy, income, size of family were also collected. Mean time of interview was 35 minutes for each client. Statistical analysis: Data were analyzed using the statistical package for the social science (SPSS) 14 version. Descriptive statistics were used for all demographic characteristics of study subjects. Student's `t`-test was used for comparison of quantitative variables. Inter domain correlation coefficient between domains was calculated. Correlation coefficients were also calculated for correlation between age, CD 4 count, and income with QOL. RESULTS Sociodemographic features of the sample are shown in table 1. Of the 180 subjects 65.5% were men. The age ranged from 20 to 56 years (mean=33.85 years, SD=7.01). 68% subjects studied up to primary level and 68.89% were living with spouse % of subjects belonged to the lower and upper lower class. Mean per capita income family per month of all study subjects was Rs ± CD 4 count varied between cells/ 3 mm. Mean CD 4 counts in all study subjects 3 was ± cells/ mm. Table 2 shows mean score ±SD of patients on various domains and facets of WHOQOL- HIV. The poorest QOL was experienced in the area of positive feeling under psychological domain with 50.3% of patients having a score less or equal to 2.25 on the 1-5 scale. The mean score of this domain was 13.6 on 4-20 scale. The internal consistency between all the domains of the instrument (WHOQOL-HIV) was found to be good (Cronbach alpha statistic of 0.82). The mean scores in the six domains of QOL were maximum for the physical domain and minimum for psychological domain. In men the scores for psychological domain only was higher than women. Mean scores on the important items were considered from moderately important to extremely important. The highest score (mean ) was given to get adequate health care and lowest score (mean ) was given to thinking about death and dying. 21% of the subjects reported own health status poor or very poor. The subjects were divided into two groups by the level of education up to secondary. Analysis based on this educational level showed a significantly statistical difference between overall QOL and education. Age correlated with level of independence and environment. Correlation index of WHOQOL-HIV domains with overall QOL and among individual domains,

4 104 Marashi T et al Variable Male Female Total (n=118) (n=62) (n=180) N % N % N % Age (years) <30 42(35.60) 22(35.49) 64(35.56) (52.54) 32(51.61) 94(52.22) >40 14(11.86) 08(12.90) 22(12.22) Mean (SD) 33.82(7.37) 33.92(6.36) 33.85(7.01) Educational level Illiterate 18(15.25) 10(16.13) 28(15.55) Primary school 44(37.29) 24(38.71) 68(37.78) Secondary 46(38.98) 20(32.26) 66(36.67) University 08(6.78) 06(9.68) 14(7.78) Post graduate 02(1.70) 02(3.22) 04(2.22) Marital status *Single 31(26.27) 25(40.32) 56(31.11) Married 87(73.73) 37(59.68) 124(68.89) Occupation Unemployed 20(16.95) 33(53.23) 53(29.45) Government 08(6.78) 01(1.61) 09(5.00) Private 52(44.07) 17(27.42) 69(38.33) Business 38(32.20) 11(17.74) 49(27.22) **Socio-economic status Table 1. Socio- demographic characteristics of Study subjects (N=180) Lower 39(33.05) 17(27.42) 56(31.11) Upper Lower 51(43.22) 31(50.00) 82(45.56) Lower Middle 16(13.56) 11(17.74) 27(15.00) Upper Middle & Upper 12(10.17) 03(4.84) 15(8.33) Mean (Rupees) (SD) * Single (include unmarried, separated, divorced and widowed) ** Using Mahajan Gupta classification based on per capita family income per month modified on the basis on CPI of Nov. 2003

5 Assessment of Quality of Life among HIV Positive 105 Table 2. Mean Scores (± SD) OF WHOQOL-HIV Domains and Facets of the Study Subjects DOMAINS MALE (n=118) FEMALE (n=62) TOTAL(n=180) PHYSICAL 15.34± ± ±2.57 Pain & discomfort 3.73± ± ±0.85 Energy & fatigue 3.54± ± ±0.55 Sleep & rest 3.98± ± ±0.81 HIV symptoms 4.07± ± ±0.92 PSYCHOLOGICAL 13.61± ± ±2.34 Positive feeling 2.60± ± ±0.79 Cognitive performance 3.59± ± ±0.62 Self esteem 3.33± ± ±0.83 Body image & appearance 3.76± ± ±0.70 Negative feeling 3.72± ± ±0.93 LEVEL OF INDEPENDENCE 14.15± ± ±2.63 Mobility 3.69± ± ±0.77 Daily life activities 3.58± ± ±0.82 Dependence on treatment 3.50± ± ±1.01 Working ability 3.36± ± ±0.85 SOCIAL RELATIONSHIPS 13.58± ± ±2.41 Personal relationship 3.86± ± ±0.67 Social support 2.77± ± ±0.77 Social inclusion 3.46± ± ±0.78 Sexual activity 3.48± ± ±0.69 ENVIRONMENT 13.60± ± ±1.99 Physical safety 3.43± ± ±0.61 Home environment 3.60± ± ±0.72 Financial resources 2.85± ± ±0.93 Health /social care 3.81± ± ±0.54 Learning opportunities 3.60± ± ±0.55 Leisure opportunities 2.86± ± ±0.75 Physical environment 3.70± ± ±0.56 Transports 3.57± ± ±0.87 SPIRITUALITY, RELIGION 14.43± ± ±2.46 Spirituality religion, personal beliefs 3.76± ± ±0.75 Forgiveness and blame 3.04± ± ±0.98 Concerns about the future 3.42± ± ±0.77 Death and dying 4.22± ± ±0.95 Overall QOL 14.09± ± ±2.04

6 106 Marashi T et al Physical Psychological Table 3. Correlation between Domains of WHOQOL-HIV Physical Psycho Social Level of Environ- Spirituality Overall logical relationships dependence ment QOL Social relationships Level of dependence Environment Spirituality Overall QOL (P < for correlation between any two domains) calculated by Pearson's statistics, are shown in table 3. Each domain was significantly related with overall QOL using two-tailed `t` test (p<0.0001). Moreover, each domain was significantly related with others (p<0.0001). Overall QOL and WHOQOL HIV domains were not associated with gender, marital status, CD4 count, and income of family per person. DISCUSSION It is alarming to see the increasing incidence of HIV positivity in India. With current treatment options to slow disease progression patients are living longer after diagnosis and initial treatment. Hence, interest has been increasingly focused on optimizing not only the duration but also the quality of life of patients. The present study specifically evaluates QOL among AIDS patients. Globally it is desirable to have research instruments that produce comparable scientific results across countries. Several instruments have been specifically developed to assess the QOL of people living with HIV/AIDS (PLWHA). Some of these include Medical Outcome Study (MOS- 13 QOL), the AIDS Health Assessment 14 Questionnaire AIDS-HAQ), the General 15 Health Assessment, Multidimensional Quality Of Life Questionnaire for HIV/AIDS 15 (MQOL-HIV), but among many QOL instruments used globally for HIV infected population, WHOQOL-HIV has been used widely. WHOQOL-HIV performs very well in this population of individuals with AIDS. Studies have shown no significant difference between WHOQOL-HIV domains 17 6 and CD 4 count. (Badia et al, Starance et al ). No association between QOL scores and marital status was reported by Starance et al, 6,13 Kohli et al. Psychological domains assess influence of factors like positive feeling, cognitive performance, self-esteem, body image and negative feeling. Psychological domains had the minimum score in our study. No significant difference was found in any 16 domain of QOL by gender. In women the score in psychological domain was reported to be lower than men but that was not 6,18 significant. We also observed similar finding. Women reported poorer QOL for pain, energy, positive feeling, self-esteem negative feeling, sexual activity, health and social care, learning opportunities, transport, Spirituality religion, personal beliefs, death and dying. WHOQOL HIV group also 11 observed similar findings.

7 Assessment of Quality of Life among HIV Positive 107 We found a significant difference between overall QOL with level of education. WHOQOL HIV Group reported similar findings. Naveet et al found level of education had a significant effect on 18 psychological domain and Kohli et al found physical activities were positively correlated with education. In the current study, the association of income and QOL was not evident, but 16 according to research by Kemmler et al, there was the strongest association between QOL with income. Each of the 6 domains in the present study correlated with overall QOL (p <0.001). Another study also showed significant correlations between all domains 6 (p<0.001). We found a significant correlation between level of independence and environment domains and age. Other researchers also observed similar 14,17,19 finding. In summary we observed a significant relationship of quality of life with education and age. PLWHA with better education had better quality of life. Younger people showed poorer QOL than older people. Psychological domain had the minimum mean domain score and physical domain had the maximum mean domain score and we found significant correlations between scores of six domains with overall QOL. REFERENCES 1. H I V / A I D S a n d a d o l e s c e n t s. accessed on 13/10/ World Health Organization. AIDS epidemic update. [Online] Dec [cited 2007 Feb 10]; [94 screens]. Available from: URL 6_EpiUpdate_en.pdf 3. United Nations Programme on HIV/AIDS (UNAIDS) Report on the global HIV/AIDS epidemic [Online] Aug [cited 2008 Aug 20]; [362 screens]. Available from: URL: mediacentre 4. Kumar R et al. Trends in HIV-1 in young adults in south India from 2000 to 2004: a prevalence study. Lancet 2006; 367 (9517): National AIDS Control Organization. HIV/AIDS epidemiological surveillance and estimation report for the year Ministry Health & Family Welfare Government of India, New Delhi. April 2006; Strance F, Cafaro L, Abrescia N, Chirianni A, Izzo C, Rucci P, de Girolamo G. Quality of life assessment in HIV positive persons: Application & Validation of WHOQOL HIV, Italian version. AIDS Care 2002; 14: Vidrine DJ, Amick BC, Gritz ER, Arduino Rc. Functional status and overall quality of life in a multiethnic HIV-positive population. AIDS Patient Care and STDs 2003; 17: Geurtsen B. Quality of life and living with HIV/AIDS in Cambodia. Journal of Transcultural Nursing 2005; 16: Carr AJ, Higginson IJ. Measuring quality of life: are quality of life measures patient cantered? BMJ 2001; 322: Lechner SC, Antoni MH, Lydston D, Laperriere A, Ishii M, Devieux J, Stanley H, Ironson G, schneiderman N. Cognitivebehavioral interventions improve quality of life in women with AIDS. Journal of Psychosomatic Research 2003; 54: The WHOQOL HIV Group. WHOQOL-HIV for quality of life assessment among people living with HIV and AIDS: results from the field test. AIDS Care 2004; 16: W.H.O.Scoring and coding for the W H O Q O L - H I V i n s t r u m e n t s /media/en/613.pdfaccessed on 10/05/ Kohli RM, Sane S, Kumar K, Paranjape RS, Mehendale SM. Modification of medical outcome study (MOS) instrument for quality

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