The socioeconomic burden of pediatric tuberculosis and role of child-sensitive social protection | BMC Public Health

Social protection programs for TB disease have focused on adults, and costs incurred due to personal illness. Our findings demonstrate that households face significant economic challenges when seeking TB diagnostic care for their child, and a multi-component intervention that addressed these costs and challenges could mitigate ongoing burden across SES categories. These findings support that TB-specific social protection interventions have the potential to reduce the socioeconomic burden of childhood TB on families and address the global priority to eliminate catastrophic costs due to TB.

In the process of seeking care, 80% of households noted that their child’s illness impacted their finances. Ultimately, we found that almost one in five households reported catastrophic costs. This high pre-diagnosis burden is reflective of the technical and systemic challenges that delay a diagnosis of pediatric TB [27], as children averaged three prior medical visits and over a third had prior testing. At the same time, this estimate is lower than the global catastrophic cost prevalence (48%) and the Uganda national TB costing survey (65%) [6, 20]. It is likely that our finding is an underestimate as we did not administer the entire WHO TB costing survey. However, our results are consistent with past studies that households with children who have TB face a large financial burden [17, 20], and interventions are needed to reduce catastrophic costs due to TB.

Children with TB can also have significant school disruption [12], and we found a quarter of children missed school and more than a quarter of caregivers were concerned that their child may experience developmental delays. Parents have previously cited that they are worried that their child will not perform as well as peers, be behind in their studies, and will not be prepared for exams due to TB, or that their child will face future barriers due to TB stigma [17]. In previous qualitative work, caregivers also observed detriments to the cognitive and emotional wellbeing of their child [18]. It is well-recognized with other infectious diseases that school disruption, poverty, food insecurity, malnutrition, and psychosocial stress can contribute to gaps in developmental potential and the importance of early intervention [28, 29]. For example, a social protection intervention that combined cash grants and food security improved educational and cognitive outcomes for HIV positive children in South Africa and Malawi [14]. In considering a child-sensitive social protection program for TB, our findings support linkage to services that support education and development [30].

Two months after receiving benefits, most caregivers did not report ongoing negative effects on their child or household. Although we did not have a comparison group who did not receive benefits, several national TB costing surveys including from Uganda have found that post-diagnosis costs are high [31, 32]. In other settings, the highest costs were experienced two months following treatment initiation [1], and in Uganda, the estimated post-diagnosis costs were about ten times the average monthly wage [20]. These costs are driven by direct non-medical expenses including travel, nutritional supplements and food, and in the Uganda national survey, these were higher in children than adults [4, 20]. We provided cash transfers to support direct non-medical costs, and while it primarily supported transportation, the amount provided (3–10% of annual income depending on SES tertile) likely could cover other costs. Indirect costs from loss of income were the second largest costs to caregivers of children with TB in the national survey. Support of direct medical costs and patient navigation may have helped mitigate indirect costs by allowing immediate initiation of treatment so that caregivers could return to work as soon as possible. This hypothesis is supported by the large drop in total costs after only 2 months of care, with most reporting no further loss of income or missed work. Further studies are needed to quantify the socioeconomic effects and treatment outcomes of a child-sensitive TB social protection strategy in comparison to children who received standard TB care.

In this pilot, we utilized a large cohort of children initiated on TB treatment with close follow-up. However, there were limitations that can inform additional studies. Longer follow-up is needed with a comparison group who receives standard TB care alone. For households with discrepant responses, we included any affirmative answer and may have overestimated burden, although the majority of households did not have discrepant responses. As our goal was to assess pre-diagnostic burden, we excluded children with a prior TB diagnosis. Further evaluation is needed for children and families who were either lost to follow up or had relapse or recurrence. They may have a greater social and financial burden, as we found those who did not return to follow up represented a larger proportion with low SES. The amount of cash provided per household may not be feasible to implement on a larger scale, and data from our study and national costing surveys can inform covering direct and/or indirect costs [4]. Future work could also include formal developmental screening instead of caregiver report. Returning to school is related to clinical improvement, and further studies are needed to examine how social protection interventions can improve treatment outcomes in children. This study was conducted at a tertiary care center, and more research is needed in routine care settings. Lastly, studies have shown a larger socioeconomic burden for households with multi-drug resistant (MDR) TB and HIV co-infection [18, 32], and additional work is needed to assess social protection interventions for these groups.