Karl Peltzer Nancy Phaswana-Mafuya

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Health-related quality of life in a sample of HIV-infected South Africans International Conference on Health Promotion and Quality of Health Services in Bangkok, 20 Nov 08 Karl Peltzer Nancy Phaswana-Mafuya

Background About 5.54 million people were estimated to be living with HIV in South Africa in 2005 with 18.8% of the adult population (aged 15 49) and about 12% of the general population infected 350,000 on ARV treatment in 2008

Background Health-related quality of life (HRQoL) is a multidimensional concept: global health perspectives, symptom status, functional status, biological and physical variables, individual and environmental characteristics, and general health perceptions (Wilson & Cleary, 1995)

Background Aim of this study: to explore HRQoL self-reported HIV symptoms in a group of PLHIV residing in resource-poor communities in the Eastern Cape Province, South Africa.

Method Sample and procedures The study involved 607 PLHIV sampled from all districts of the Eastern Cape Province: recruited through convenience sampling by other PLHIV at health facilities (42%), key informants in the community (44.1%) and support groups (13.9%).

Method Measures Health-related quality of life (HRQoL) The WHOQOL-HIV BREF is based on the WHOQOL-HIV measure, one of the two World Health Organization s Quality-of-Life Instruments for use with HIV-infected populations (O Connell, Skevington & Saxena, on behalf of the WHOQOL-HIV Group, 2003)

Method Measures: The Revised Sign and Symptom Checklist for Persons with HIV Disease (SSC-HIVrev) The SSC-HIVrev is a 72-item checklist of HIV/AIDS-specific physical and psychological symptoms (Holzemer et al., 2001) Demographic and health-status characteristics

Table 1: Personal characteristics of the participants (n = 607 PLHIV) Females Males Age (years) 18 25 26 35 36 45 46+ Race Black Coloured White Locality Rural Informal settlement Urban n 475 132 80 274 187 66 588 17 2 290 51 262 % 78.3 21.7 13.2 44.8 30.8 10 96.9 2.6 0.3 48.1 8.5 43.4

Results

Table 2: Severity of illness of participants (n = 607 PLHIV) N % Year known HIV-positive: 1988 1997 24 4 1998 2001 65 10.8 2002 2003 152 25.2 2004 2005 206 34.1 2006 onwards 157 26 AIDS diagnosis: Yes 395 66.4 No 200 33.6 Most recent CD4 cell count: <200 196 32.3 200 350 145 23.9 >350 169 27.8 Missing data/ Don t know 97 16 Currently on ART 292 48.1 Commenced ART (among those on ART): Less than 3 months ago 18 7.8 3 6 months ago 39 16.8 6 months to 1 year ago 52 22.4 1 2 years ago 59 25.4

Table 3: Symptom rank order, frequency, percentage and mean intensity Problem Rank Frequen cy Percentage Mean intensity a Headaches 1 403 79.0 2.15 Fever 2 351 68.8 1.83 Thirsty 3 346 67.8 2.17 Fatigue 4 340 66.7 2.10 Weakness 5 338 66.3 1.79 Painful joints 6 332 65.1 2.08 Nausea 7 307 60.2 1.74 Muscle aches 8 302 59.2 1.95 Fear/Worries 9 300 58.8 1.87 Dizziness 10 293 57.5 1.89

Table 4: The WHOQOL-HIV BREF descriptive statistics according to sex of the participants (mean values ± standard deviation) Total Men Wome n t Overall quality of life 2.8 ±1.0 2.6 2.8-2.35* General health perceptions 3.1 ±1.0 2.8 3.1-2.88** Physical domain: 13.2 ±3.2 12.9 13.2-0.83 3. Sleep and rest 3.5 ±1.0 3.5 3.5-0.36 Psychological domain: 13.9 ±2.8 13.4 14.0-2.16* 6. Self-esteem 3.6 ±1.0 3.5 3.7-1.99 Level of independence domain: 12.6 ±3.1 12.4 12.7-1.16 9. Mobility 3.4 ±1.0 3.4 3.4 0.09 Social relationships domain: 14.0 ±2.8 13.8 14.1-1.14 14. Social support 3.9 ±0.8 3.8 3.9-1.48 Environment domain: 12.2 ±2.2 12.0 12.3-1.01 19. Health and social care: accessibility and quality 3.6 ±0.9 3.6 3.6-0.40 Spirituality/religion/personal beliefs domain: 14.4 ±3.5 13.9 14.6-1.82 54. Death and dying (r) 3.6 ±1.3 3.5 3.6-1.21

Table 5: QoL and health variables by AIDS diagnosis and CD4 count values AIDS diagnosis No AIDS diagnosis t-value CD4 count <200 CD4 count 200 350 CD4 count >350 F Overall quality of life (QoL) score 2.8 (0.9) 2.8 (1.1) -0.17 2.6 (1.0) 2.9 (1.1) 2.9 (1.1) 3.78* General health perceptions 3.0 (1.0) 3.1 (1.0) -0.72 3.0 (1.1) 3.2 (1.1) 3.2 (1.1) 1.30 Domains: Physical health 13.2 (3.2) 13.0 (3.3) -0.78 12.6 (3.3) 13.4 1 (3.1) 13.7 1 (3.1) 6.16** Psychological health 14.0 (2.6) 13.5 (3.0) -2.10* 13.5 (2.8) 14.3 1 (2.7) 14.5 1 (2.6) 7.77*** Level of independence 12.6 (3.1) 12.7 (3.1) 0.34 12.2 (3.0) 12.9 1 (3.2) 13.4 1 (3.0) 7.63*** Social relationships 14.2 (2.8) 13.6 (2.8) -2.57** 14.0 (2.8) 14.4 (2.9) 14.3 (2.6).84 Environment 12.3 (2.0) 12.0 (2.6) -1.89 12.2 (2.2) 12.3 (2.1) 12.7 (2.1) 2.23 Spiritual/religious/personal beliefs 14.9 (3.3) 13.5 (3.7) 4.52*** 14.5 (3.5) 15.0 (3.5) 14.3 (3.1) 1.46 HIV-symptoms index 27.5 (13.0) 23.6 (14.4) 3.33*** 28.4 1 (13.4) 26.2 (13.7) 23.7 (14.1) 5.24***

Table 6: QoL and health variables by ART status On ART Not on ART t-value On ART (1 year or more) t-value Overall QoL 2.8 (1.1) 2.7 (1.0) 1.57 1.19 General health perceptions 3.2 (1.1) 2.9 (1.1) 3.42* -0.06 Domains: Physical health 13.3 (3.2) 13.1 (3.2) 0.69-0.73 Psychological health 14.0 (2.7) 13.8 (2.8) 0.55-0.83 Level of independence 12.7 (3.1) 12.6 (3.1) 0.55 1.47 Social relationships 14.2 (2.8) 13.9 (2.8) 1.22-0.79 Environment 12.2 (2.2) 12.2 (2.2) -0.23-0.43 Spiritual/religion/pers onal beliefs 14.6 (3.5) 14.3 (3.5) 1.04-1.19 HIV symptom index 25.9 (13.0) 26.2 (14.3) -0.26-2.23**

Table 7: QoL and health variables by disability grant status Overall perceived quality of life (QoL) General health perceptions Domains: Physical health Psychological health Level of independence Social relationships Environment Spiritual/religious/personal beliefs HIV-symptoms index Disability grant status Receiving a grant 2.9 (1.1) 3.2 (1.1) 13.5 (3.1) 14.2 (2.6) 13.1 (3.1) 14.3 (3.0) 12.4 (2.1) 14.6 (3.3) 25.5 (13.1) Not receiving a grant 2.6 (1.1) 2.7 (1.3) 12.4 (3.5) 13.4 (3.1) 12.2 (3.4) 13.7 (3.0) 11.8 (2.5) 13.8 (3.9) 31.3 (15.0) t-value 2.35* 4.08*** 2.85** 2.50* 2.46* 1.69 2.43* 1.75 3.60***

Table 8: Multivariate logistic regression between domains of QoL, HIV symptoms and medical variables and socio-economic variables with overall quality of life WHOQOL-HIV BREF subscales Adjusted by sex, age and WHOQOL- HIV BREF domains 95% CI p-value Level of independence 1.12 1.01 1.24 0.035 Psychological health 1.21 1.06 1.39 0.007 Environment 1.19 1.06 1.34 0.003 Physical health 1.03 0.93 1.14 0.531 Spirituality 1.36 1.16 1.59 0.0001 Social relationships 0.99 0.91 1.08 0.832 Nagelkerke r 2 (effect of size) = 0.42 HIV symptoms and medical variables Adjusted by sex, age, HIV symptoms and CD4 counts 95% CI p-value HIV-symptoms index 0.93 0.91 0.95 0.0001 AIDS diagnosis CD4 cell count 1.15 0.94 1.41 0.17 Nagelkerke r 2 = 0.25 Socio-economic variables Adjusted by sex, age and socioeconomic variables 95% CI p-value Educational level 1.17 1.01 1.34 0.03 Enough food to eat 1.36 1.06 1.75 0.02 Receiving a disability grant 1.75 1.11 3.41 0.06 Disability grant stopped Nagelkerke r 2 = 0.12

Discussion This study among 607 PLHIV in the Eastern Cape found overall low levels of quality of life (QoL) among the domains in the WHOQOL- HIV BREF: environment (12.2), level of independence (12.6), physical health (13.2), psychological health (13.9), social relationships (14.0) and spirituality (14.4), compared to the results of other surveys among PLHIV (cf. WHOQOL-HIV Group, 2004)

Discussion Surprisingly, the group of participants with an AIDS diagnosis scored higher in the spiritual/religious/personal beliefs, social relationships and psychological domains, and lower on the HIV-symptoms index, than those with no AIDS diagnosis. These findings indicate that HIV infection impacts early and on all aspects of QoL. Health workers must not neglect the needs of patients with early HIV disease and must support them at a primary-care level.

Discussion Similar to the results of other studies (e.g. Eriksson et al., 2000; Wig et al., 2006), we found that PLHIV with higher CD4- cell-count values scored higher in the domains: overall quality of life, psychological health, physical health and independence level, and lower on the HIV-symptoms index, than those with lower CD4-cell-count values.

Discussion Among medical variables and HIV symptoms, CD4 cell count and fewer HIV symptoms without an AIDS diagnosis were identified as predictors for perceived overall QoL. Among the socio-economic variables, having sufficient food to eat, a higher educational level, and receiving a disability grant were identified as predictors for overall QoL.

Discussion This study found that on comparing persons receiving ART at the time of the study versus those who were not receiving ART, there were no significant associations regarding all WHOQOL-HIV BREF domains (except for general health perceptions) and the HIV-symptoms index.

Limitations of the study Because non-probability sampling was used, the findings are not generalisable to the entire population of PLHIV in the Eastern Cape Province. Another limitation of the study is that CD4 cell counts were assessed by self-report data and not confirmed with clinical records. Even though about 32% of the patients reported a CD4 cell count less than 200, the group as a whole seemed to be extremely ill: about 66% self-reported to have been given an AIDS diagnosis

This study was funded by the Eastern Cape Socio-Economic Consultative Council and the Eastern Cape AIDS Council, South Africa. Acknoledgements