El Duelo migratorio en la niñez

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CHAPTER 5

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unemployed.⁶⁴ This finding reinforces the knowledge that tuberculosis can lead to loss of livelihood and result in a downward spiral of poverty. Reported household monthly income in this study was similar in the cases and controls. However, the figures given may be unreliable as people were unwilling to divulge personal details such as income.

The study showed that all four WHOQOL-BREF domain scores were impaired in patients with TB at the point they were starting treatment. The lowest scores were recorded in the environment domain which relates to financial resources physical environment, security, home environment and participation in and opportunities for leisure. This was followed by the physical domain, which reflects the capacity to carry out everyday activities. The highest score was in social relationships which assesses social support and describes a person’s interactions with others. These findings were similar to an earlier study conducted in a teaching hospital in Lagos State where the lowest score was in the environmental domain (66.33±15.20) and the highest score was also in the social domain (70.80±18.12).⁷¹ The highest domain scores were also reported in the social domain in studies carried out on health-related quality of life of patients with tuberculosis in a previous study conducted in Taiwan, India and Saudi Arabia.^23,134,135 It supports findings from studies carried out in Ethiopia in which respondents reported improvements in family relationships despite their illness^156,163

The findings in this study on HRQOL impairment contrasted sharply with a study conducted in Ilorin where the least impairment was found in the physical and environment domain. However, the respondents in that study had been on treatment for at least two months which is long enough for improvement in physical signs and symptoms for patients on treatment. The relatively higher scores in the social domain may be explained by culture and norms that foster social relationships and promotes family support, even in difficult situations. Religion is also known to play an important role in the average Nigerian’s life and this might also be a source of social support. It is not surprising that the

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lowest scores where in the environment domain, as TB is associated with loss of financial resources;

and may also restrict opportunities for recreation and leisure activities.

It was noted that the mean scores across all four domains were lower than scores reported for HRQOL of individuals with PTB in studies that were earlier conducted in Nigeria, particularly in the environment domain. ^42,71 This may be reflective of the economic recession the country was experiencing at the time of this study, further causing a negative impact on a vulnerable group. This situation could further be amplified in a state that has a high cost of living, such as Lagos. The lower scores obtained in this study when compared with the earlier study in Lagos may also be because patients in that study were recruited at different stages of treatment unlike this study where study participansts were all newly-diagnosed

There was a steady and significant improvement in WHOQOL-BREF domain scores with anti-tuberculosis treatment, demonstrating the efficacy of the aniti-tuberculous drugs. However, the changes were marked between initiation of treatment and the end of the second month (the intensive phase of treatment) compared with the end of the second and sixth month (the continuation phase).

Similar studies conducted in India and South Africa also revealed improvement in HRQOL over the six-month treatment period, with marked improvement at the end of the second month.^22,60 This is not unexpected and is largely due to resolution of symptoms experienced by the patients. This point needs to be emphasized to patients on treatment to encourage them in encouraging them to adhere to treatment and not default because they think they are already cured due to improvement in symptoms they presented with.

In the four domains of the WHOQOL-BREF, controls had significantly higher mean scores compared to the TB patients both at the initiation and at the end of treatment. The largest deficit was in the

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physical domain. This is suggestive of residual impairment of HRQOL even at treatment completion.

This is not unexpected considering the chronic and often destructive nature of PTB, which may lead to irreversible damage to the lungs and airways. The domain scores in controls were also higher than scores reported from TB patients in other studies conducted in Nigeria and India.^60,71 In another study conducted in India, controls had significantly higher mean scores across all domains at initiation of treatment. However, only scores in physical and psychological domains remained significantly lower in patients after treatment.¹³⁶ In a Taiwanese study, however, there was no significant difference between mean scores in the social domain between controls and cases. However, that study had a relatively small sample size.¹⁸³ Among the controls in Taiwanese study, the lowest mean score was also in the environment domain while the highest score was in the physical domain. Reported health-related quality of life was still worse in cases after controlling for unemployment as a possible confounder.

Measurements of HRQOL of TB patients using the DR-12 tool showed significantly higher mean scores by the end of treatment. The mean DR-12 total scores at the baseline, the end of the second month and the end of the sixth two and six months were higher than scores reported by a study conducted in India which assessed patients in the same time frame.¹⁸⁴ The rate of increase of HRQOL scores measured using the DR-12 was steeper than for the WHOQOL-BREF, with most patients achieving the maximum DR-12 scores by the end of treatment. This was probably because majority of the items in this tool relate to physical and psychological symptoms; and patients could have experienced resolution of most of these symptoms by the time treatment is completed. In contrast, the WHOQOL-BREF is affected by multiple factors including factors beyond the control of the patient particularly in environment and social domains. This study showed a significant and positive correlation between related sub-scales of the DR-12 and the WHOQOL-BREF, with the strongest

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association between the psychological domain of the WHOQOLBREF and the emotional and social sub-scale of the DR-12 at baseline (r = 0.461, p<0.001). There was also a moderate, positive correlation overall DR-12 and WHOQOL-BREF scores measured at baseline, the second month and the sixth month. The strongest correlation between the overall scores of both scales was at six months (r=0.419.

p<0.001). It is not known that any previous study has compared these two tools. Although DR-12 is one of the very few TB-specific tools for measuring HRQOL, it has not gained popularity and its application has largely been confined to studies done in India where the tool was developed, with the exception of a study conducted in Yemen.^140,142 This may be because extensive assessments of its psychometric properties have not be carried out.

This study explored TB patients’ experiences of stigma and their perception of the effect of TB on their social relation. The most pronounced stigma factor on the stigma scale was “feeling hurt because of how others will react to knowing they have TB”, followed by “keeping their distance from others to avoid spreading TB”. The least ranked were “being afraid to tell their families they had TB” and the fear of losing their friends. Over a third reported that TB had worsened their relationship with friends or family. Despite this, another third reported that there was an improvement in family support. This suggests that though social functioning could be hampered by TB and patients could be anxious about their diagnosis, they still count on the support of family and friends to get through the disease. This supports the finding that the social domain was the least affected domain in terms of HRQOL.

In this study, there was no association between gender and overall or domain HRQOL scores. This contrasts with findings in a study conducted in India where being of female gender had a negative effect on all baseline domain scores. A study conducted in China further found that even at the end of treatment, females had poorer HRQOL scores.¹⁴⁷ Another Indian study conducted in Kayseri found that women had a lower mean score for overall HRQOL. In both studies, the authors suggested that

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lower HRQOL could be explained by social roles and restrictions relating to women. They also suggested that women might face more economic difficulties. In contrast to these findings, a previous study conducted in Lagos found that females had better quality of life in the psychological and social domains and the reason given was that females in the Nigerian society appear to be much given to issues of spirituality social networking and interpersonal relationships. However, several other studies found no associations between gender and HRQOL, including studies that explored HRQOL in patients with MDR-TB.^116,135

In this study, marital status and age were not significantly associated with HRQOL. This was not in agreement with a similar study previously conducted with Lagos where those who were married had higher scores in the physical domain; and those who were less than 50 years had higher mean scores in the physical, psychological and social domains.⁷¹ In a study conducted in Kwara State, marital status but not age, was found to be associated with overall HRQOL.⁴² However in a study that also assessed the HRQOL of PTB patients over the period of treatment, marital status was not found to be associated with HRQOL.¹⁵¹

Those who were HIV-positive reported significantly lower HRQOL scores in the social, psychological and overall HRQOL domains. This is expected, considering that such patients must cope with the effects of two chronic debilitating diseases. Furthermore, several studies conducted on HRQOL of those with HIV&AIDS using the WHOQOL-BREF revealed that mean social domain scores were markedly lower than those of the physical, environmental and psychological domains.^68,162,168 These relatively low scores suggest ineffective social support networks, because of the stigma and discrimination. It is opined therefore that HRQOL is worse in those with HIV/TB co-infection compared with individuals with HIV alone, who in turn have worse HRQOL compared with TB alone.

In this study however, HIV status was not significantly associated with HRQOL scores at the second

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and sixth month of treatment. Several studies in assessing HRQOL of those with TB, excluded those with HIV co-infection.²²

Study participants who were unemployed had significantly lower mean scores in all the domains of the WHOQOL-BREF and overall HRQOL at the baseline. It remained a predictor of poor HRQOL after controlling for the effect of age, sex, socio-economic status, HIV status and lung function. A significant effect of employment status has been reported in previous studies.^22,185 Unemployment was also found to be associated lower physical domain scores in the study previously conducted in Lagos State.⁷¹ It can be assumed that having a job increases the chance of having financial security, which is a key facet of the environment domain. Work capacity in itself, is a key component of the physical domain. Employment may also affect HRQOL by improved social interactions and less psycho-social distress.

Those with higher socio-economic status (based on occupation and educational level) had significantly higher scores in psychological domain compared with those with low socio-economic status. When HRQOL was classified as good and poor, those in the middle socio-economic stratum were more likely to report good HRQOL (OR=2.82; CI =1.10-7.20). This finding was in agreement with findings from a study conducted in Uganda. In that study however, another HRQOL scale, the SF-36 was used and belonging to the highest tertile of socioeconomic status (SES) was associated with good HRQOL in the intensive phase (β = 14.56, p = 0.007).¹⁸⁶ In this study, presenting four weeks or more after onset of symptoms was predictive of a poor HROL score. This finding has not been explicitly explored in other known studies conducted in Nigeria. However, studies have shown that delayed presentation may be associated with poor treatment outcomes.^13,88 Stigma associated with the disease may also lead to a delay in presentation.¹⁶⁰

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A significantly higher proportion of patients had smoked in the previous year (21.9%) compared with

controls (5.4%). Tobacco use has been reported as major driver of the TB epidemic.

Studies have revealed that smoking is associated with poor lung function and poor treatment outcome in patients treated for TB. However, smoking was not found to be significantly associated with HRQOL in this study. This contrasted with a study in Iraq that found that smoking was significantly associated with poor HRQOL. However, in this study the another HRQOL tool, the Functional Assessment of Chronic Illness Therapy - Tuberculosis (FACIT-TB) tool was used rather than WHOQOL-BREF.¹⁸⁷ The FACIT-TB comprises 45 items and covers the following domains: physical being, social and economic being, emotional being/living with TB and functional well-being. It was also developed as a 5-point Likert- type scale, which is similar to the WHOQL-BREF.

The FACIT-TB total score ranges from 0 to 180, with a higher score corresponding to a better HRQOL.

A study in Malaysia also found showed that tobacco smoking is a predictor of poor TB treatment outcomes, and that an integration of DOTS with smoking cessation intervention improved overall HRQL outcomes among TB patients who are smokers.¹⁸⁸ The reason for a lack of association between smoking and HRQOL in this study could not be immediately ascertained. It was worrisome that 29%

of the patients took alcohol, considering the potential interactions with anti-tuberculous medication.

Lung function was impaired in 87.3% of respondents at baseline and this fell to 79.5% by the end of the sixth month. In contrast, 39% of PTB patients had lung function impairment in a study conducted in Indonesia.¹⁶⁶ This could be as a result of delays in presentation which may worsen the lung damage caused by TB. It may also be due to differences in HIV prevalence. In the Indonesian study, HIV prevalence among TB patients was about 2% as opposed to this study where HIV prevalence was 23%;

and studies have shown that being HIV-positive is associated with poor lung function.¹⁸⁹ Study

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participants with impairments in lung function had significantly lower HRQOL scores across all the domains, at the end of the second month of treatment.

Respondents who had a favourable treatment outcome (treatment completed or cure) had significantly higher mean scores in the social domain of the WHOQOL-BREF. They also had higher overall HRQOL scores. It is not known that studies have directly assessed the relationship between HRQOL as measured by the WHOQOL-BREF and treatment outcome. However, a study conducted in Iraq using the FACIT-TB tool found that the FACIT-TB total score made a statistically significant contribution towards predicting the likelihood that a patient would have a favourable TB treatment outcome.¹⁸⁷

This study showed that there was a statistically significant difference in HRQOL between TB patients and controls using the WHOQOL-BREF. This difference was demonstrated in each of the four domains and the overall HRQOL score. It also showed that HRQOL of life improved significantly over the period of study. Health-related quality of life can be applied to track changes in functional status over time for a chronic illness such as TB.

121 5.2 Conclusion

Health-related quality of life was significantly impaired in patients with TB compared with controls in this study. At baseline, patients had significantly lower overall HRQOL and lower mean scores in the physical, psychological, environment and social domains There was a sustained and significant increase in mean domain scores of the WHOQOL-BREF across the period of treatment. However, HRQOL scores of the TB patients remained significantly lower than scores for the controls at the end of the treatment period. This means that despite the availability of effective medicines, some residual impairments remain.

There was also a steady increase in mean DR-12 scores measured at the and the end of second and sixth month of treatment. Overall, there was a moderate, positive correlation between the DR-12 and WHOQOL-BREF. Increases in WHOQOL-BREF scores were correlated with increases in DR-12. In this study, predictors of HRQOL included unemployment status, duration of symptoms prior to presentation and HIV status. Gender, marital status, lung function (as assessed by spirometry) and income level were not associated with HRQOL scores at baseline. Lung function was significantly associated with HRQOL at the end of the intensive phase (two months).

Majority of patients identified with stigma as explored in the questionnaire. They also reported that TB had affected their social relationships. Overall, majority of the patients had favourable treatment outcomes and there was a statistically significant association between treatment outcome and overall HRQOL scores and the social domain scores.

122 5.3 Recommendations

Based on the study findings, the following recommendations are made to address health-related quality of life of patients with tuberculosis:

1. Recommendations for the TB Control Program: The TB Control program should incorporate HRQOL measurements to monitor functional well-being of patients. The programme should foster linkages of patients to social welfare and psycho-social services as needed. Special attention should be given to psycho-social services for patients that are co-infected with HIV. Smoking cessation programmes should be introduced in the context of DOTS centres for a more holistic approach to TB control. Efforts should be targeted at improving early case detection.

2. Recommendations for government: Government should provide unemployment benefits for TB