At baseline, the highest scores were recorded in the domain of spirituality, religion and personal beliefs (SRPB) and the lowest scores were seen in the environmental domain. The environmental domain includes aspects related to the home environment, financial resources, accessibility to health and social care, physical environment and recreational activities. Burkina Faso is a country where 46.5 % of people live below the national poverty line [10]. The socio-economic profile of the country and the professional profile of our respondents dominated by the informal sector and small business could justify those low scores recorded in the environmental domain. In previous studies, similar results with lowest scores in environmental domain and highest scores in SRPB domain were also found in Burkina Faso [5] and in Ethiopia [13, 14]. At the third interview, the lowest and highest scores remained respectively in the environmental domain and in the spiritual domain. These results are consistent with what was found at baseline. Over the 12 months, the fact that the religious practices of the respondents and their environments did not change could justify the sameness of scores in these domains of quality of life. Other previous longitudinal studies have shown the same trends. In a study looking at HIV-Tuberculosis co-infected patients, the spirituality domain showed the highest scores and the environmental domain held the lowest scores after a 6-month follow-up [14]. In the same study, patients with HIV but not co-infected with tuberculosis showed the same trends at the end of the 6 month follow-up.
In our study, four domains of quality of life showed progression at month 6 and at month 12 when comparing to baseline. These domains were the psychological domain, level of independence, social relationships and the environmental domain. These increased scores could be partly explained by the support that PLWHA benefited from in the HIV-care facilities, where our investigation was conducted. These facilities offer, among others, support groups such as psychological and social support, where PLWHA come together and support one another in dealing with their HIV status [15, 16]. Even if the environmental domain recorded increased scores, it remained, over time, the domain with the lowest scores. In our study, the physical domain, the religion, spirituality and personal beliefs domain, showed a sawtooth pattern. Deribew et al., on the other hand, showed a significant increase in all domains of quality of life after a 6 month follow-up of PLWHA initiating HAART [14]. According to HAART status, our respondents under treatment for at least 1 year showed a steadily rising global quality of life score over 12 months. In patients who started treatment at the beginning of our study, the global quality of life score, after undergoing a jump in the sixth month, showed a relative decline, subsequently leading to stabilization. This trend can be explained by the national context and the issues PLWHA are facing. Usually, people in need of treatment in Burkina Faso wait a long time before treatment becomes available, due to financial limits. Starting treatment appears to be a solace for them. This situation, in addition to the physiological benefits of HAART, can justify the leap made in the sixth month in HIV patients who started the treatment at the beginning of the study. In their longitudinal study, Solomon et al. showed how quality of life increased, even if the increase diminished with time, with best increase which occurred between baseline and the sixth month of their 12-month follow-up [17].
Our study showed that being under HAART was associated with an increased global quality of life score. In addition, the longer a patient stayed under HAART, the more he/she experienced an increase of his/her global quality of life score. The fact that people under HAART experienced a greater increase in their global score is consistent with what was found by Liu et al. [18]. Their study showed that HAART was associated with a short term (6 month) improvement in the summary score of quality of life using the Medical Outcome Study (MOS)-HIV. But, they also showed that there was no evidence that HAART modifies trends in a long term follow-up.
Although not statistically significant, better increase was observed in women. In line with gender, Jaquet et al. in their study in Burkina Faso, showed that an increase in Mental Health Status score was significant in women and not in men [6].
In our study, having no support from relatives for medical care was associated with an increase in the global quality of life score. Because HIV is still considered as a family shame, living with HIV puts people on the margins of society or their family. In a previous study in Burkina Faso, Ouedraogo et al. showed that 57.5 % of PLWHA were living without any financial support from families [19]. All facilities where our follow-up was conducted offer the following services to PLWHA: anonymous voluntary counseling and testing (VCT), prevention counseling, medical treatment and monitoring, nutrition counseling, psychological and social support. Among other specific services offered, there is also medication, medical care for opportunist infections, home visits, support groups, and food. These specific activities undertaken by professionals or by peer educators provide those with no family support with another option. The support received from the facilities can explain why, despite having no support from relatives for medical care, the global quality of life score grew, even if it stayed lower than the global score of those who have support from families for their medical care. Psychological support received from HIV facilities may explain the association between self perception as healthy and increased global quality of life score.
In a large study involving four southern African countries, people with lower education reported higher scores of satisfaction with life [20]. Such a result is in line with our study, where illiterate people recorded better proportion with increased score, although not statistically significant.
Studies on the quality of life of persons living with HIV in developing settings have shown the association between, on one hand, the quality of life and, on the other, biological tests, in particular viral load and CD4 cell count [21–23]. In our study, it was not possible to analyze such association because very few patients have updated biological data in their routine follow-up. We assessed quality of life of persons living with HIV in their routine life, which is the daily experience of these people in HIV clinics. Even if the Government of Burkina Faso declared free HAART for those in need since January 1, 2010, PLWHA continue to face problems for getting blood work done (viral load and CD4 count), which are key to monitor the health. While biological monitoring certainly allows for better medical follow-up, it is out of reach for our patients because of the high cost. Some patients manage to do their tests through studies which pay for patients’ laboratory tests. Unfortunately, at the end of such studies, they are faced once again with the cost and discontinued tests. Once research goals are achieved in the context of HIV/AIDS, patients’ medical care is sometimes thwarted by sudden costs. According to national guidelines, these tests have to be done on a 6-month basis [24, 25]. Recent findings showed that annual monitoring of CD4 instead of every 6 months in persons with a CD4 above 250 cells/mm3 was sufficient to detect any clinical problem early enough [26]. Such results, associated with the fact that new guidelines suggest starting HAART when CD4 reaches 500 cells/mm3 [1], instead of previously indicated levels of 250 or 350 cells/mm3, will probably reduce the frequency of CD4 tests in PLWHA in their routine follow-up. As a result, significant cost savings may be made by PLWHA, giving them more opportunity to do this key test.
In our study, about 17 % of patients were lost to follow-up. Most of them were not under HAART. This can be explained by the fact that when people are not under treatment in a facility, they tend to leave that facility and look for another one in which they can find treatment. Such patients, considered as lost to follow-up in our sample, are probably in other facilities, except for two of them who were known to have died during the follow-up and one who openly refused to continue the study. The proportion of patients lost to follow-up was lower than what was recorded by Solomon et al. in their study, with 61.8 % of lost to follow-up [17].
The internal consistency of the scale used in our study gave a Cronbach’s alpha set at 0.85. This value is higher than values usually recommended (ranging from 0.7 to 0.8) [27, 28], which means our scale has good reliability. In a study conducted in South Africa using the same scale we used, the Cronbach’ alpha found was 0.88, which is near to ours [29].
According to the latest data in the general population, the prevalence of HIV is not statistically different by gender (1.2 % in women and 0.8 % in men from 15 to 49 years old) [30]. Our study was comprised of 87.5 % women. According to the data from the Ministry of Health, people living with HIV attending HIV facilities in the country were 69.7 % women [31]. In a previous study in Burkina Faso, a high proportion (72 %), but lower than ours, was recorded, even when the prevalence of HIV was higher in men than in women [32]. The proportion of women in our study is therefore partly explained by the profile of PLWHA attending HIV structures of the city, dominated by women.
Limitations
Our study was conducted in Ouagadougou, which is not representative of the whole country. However, the facilities where the study was conducted may be a good portrayal of the urban reality of the country. Our sample was based on a systematic sampling method, using the daily queue for routine follow-up in each facility. The number of interviewees per structure was reached after a 1-month enrolment period. Given enrolment was over such a short period, our sample may not be representative of patients in the HIV facilities of the city all year round. Moreover, the proportion of women in our sample, which was higher than what had been found elsewhere in other studies, can limit the representativeness of our sample. Our study did not use biological tests. Nevertheless, an intervention with biological follow-up based on laboratory tests could have been useful for the relationship between quality of life, items such as CD4 count and viral load, and clinical status.