Households of Tuberculosis (TB) patients face high TB-related costs: Somalia Experience

doi:10.21203/rs.3.rs-5002382/v1

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Research Article

Households of Tuberculosis (TB) patients face high TB-related costs: Somalia Experience

https://doi.org/10.21203/rs.3.rs-5002382/v1

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Background

Tuberculosis (TB) services are seemingly free in Somalia, but patients still incur high costs to access TB diagnosis, treatment, and care. This study is the first for Somalia. It estimated the proportion of TB-affected households experiencing catastrophic costs among TB patients and their households in Somalia, including identifying the risk factors and major patient cost drivers and describing the coping strategies they adopt to cushion its effect.

Method

A prospective cluster-sampled cross-sectional survey, nationally representative with retrospective data collection, was conducted among patients in TB care (drug-susceptible TB [DS-TB] and drug-resistant TB [DR-TB]) within the Somalia national TB network. The design was guided by the World Health Organization’s Handbook on National TB Patient Cost surveys and collected data on patients’ socio-demographic and clinical characteristics, including a model of care, self-reported income and expenses, costs (out-of-pocket expenses and indirect) for one episode of TB, risk factors for incurring cost and dissaving mechanisms. All costs were collected and reported in USD.

Result

The percentage of TB-affected households facing costs > 20% of household income was 68% (95% CI: 64% – 71%) in Somalia in 2023 and 69% (95% CI: 65% – 73%) and 62% (95% CI: 52% – 71%) amongst patients on first and second-line drug treatment respectively. Monthly self-reported household income reduced by 43% from $176 before contracting TB to $101 at the time of the interview, with 75.4% (364) of households who suffered TB-related catastrophic costs reporting that they became poorer accessing TB services. To be able to access TB treatment and care services and cope with the economic burden of TB-related catastrophic costs, 42% (375) of TB patients and their households adopted one or more dissaving strategies in the form of loans or the sale of assets. The odds of facing TB-related catastrophic costs were highest among TB patients residing in the Southwest state.

Conclusion

This study found that almost three out of four patients in TB care and their households experience a substantive financial burden accessing TB services in Somalia, particularly during the continuation phase of their treatment, and mainly driven by the direct non-medical costs. A sustainable and equitable social protection program is required to reduce the proportion of households facing financial burdens due to TB in Somalia.

Tuberculosis continued to be a plague to human existence, being the second leading cause of death from a single infectious disease after COVID-19, doubling the number of fatalities recorded for HIV/AIDS in 2022 [1–4]. It is preventable and, most times, curable. Globally, the incidence rate remained high at 133 new cases per 100,000 population per year, indicating that 10.6 million people developed TB in 2022, hoping to return to the pre-COVID-19 level by 2023 and 2024 [2]. Also, achieving the WHO End TB Strategy 2025 milestones is progressing slower than planned. The global TB incidence and number of TB deaths reduced by 8.7% and 19% between 2015–2022 instead of 50% and 19% between 2015–2025, respectively, and the proportion of people with TB facing catastrophic total costs, which is projected to be 0% since 2015, is still 49% in 2022 [1, 2]. High out-of-pocket spending and foregone income before and during TB diagnosis and during treatment are significant factors identified to limit TB control efforts in most countries, hence limiting progress towards achieving the WHO End TB Strategy 2025 milestones [5–7].

The TB situation in Somalia is complicated by a high incidence rate for TB (246 per 100,000) and rifampicin-resistant/multi-drug-resistant TB (RR/MDR-TB) (12 per 100,000) and a high mortality rate (excluding TB/HIV deaths) of 63 per 100,000 in 2022; it is among the countries with the highest burdens for RR/MDR-TB [2]. The National TB Program (NTP) of Somalia notified 18,458 incident TB cases (all forms) out of the estimated 43,000 incident cases, given a treatment coverage of 43%, slightly higher (2%) than earlier year and a gap of 57% missing incident TB cases [2, 8]. The tuberculosis program is donor-dependent and implemented in a challenging operating environment [9, 10].

Both the government of Somalia and its partners acknowledge that managing TB comes with sizeable costs and hardship for the patients; hence, TB service (diagnosis, treatment, care, and prevention) is declared free and accessible in the country. However, patients still bear the high indirect costs of accessing TB care and services, which impacts the overall cascade of care, in turn, resulting in unfavorable treatment outcomes and increased risks of TB transmission [11–13]. In most cases, the costs of accessing TB are hidden out-of-pocket as direct medical and non-medical costs, particularly in low- and middle-income countries [14]. This is likely to be the same for Somalia.

Until now, the costs incurred by patients accessing TB services in Somalia have been unknown and unreported globally by WHO [1, 2]. In line with the 3-year National TB Strategic Plan (TB-NSP) of Somalia and its target to reduce TB-related catastrophic costs [15], the first national survey of TB-affected patients costs has the objective to estimate the proportion of TB-related catastrophic costs among patients in TB care (and their households) and to assess the association between TB-related catastrophic costs and major risk factors (age, sex, education, occupation, drug susceptibility, state of residence, HIV status, and household size) among this population. For sampling purposes, we hypothesized that less than 50% of TB patients and their families face TB-related catastrophic costs with similar costs per episode faced by patients on first and second-line treatment.

Study Design

This study, a nationally representative descriptive cluster-sampled cross-sectional survey with retrospective data collection, was conducted across the seven states of Somalia between 28 December 2023 and 3 February 2024 to determine the percentage of TB-affected households facing costs > 20% in Somalia. It was designed based on the World Health Organization’s Handbook guidance on National TB Patient Cost Surveys [16]. This guidance also informed the adoption of objectives, data collection plan and management, and other aspects of the study methodology, including data cleaning and analysis. Contextual question on facility category based on the type of support received was added. The study site covered 96 public and private health TBMUs within the NTP network that treated and notified TB cases according to the national TB program’s guidelines in 2022.

Study Setting

Somalia is Africa’s easternmost country in the continent's Horn, covering an area of 637,657 sq. km, bordered west by Ethiopia, north by the Gulf of Aden, east by the Somali Sea and Guardafui Channel, and southwest by Kenya [17]. Administratively, it comprised seven states: Galmudug, Hirshabelle, Benadir, Jubbaland, Southwest, Puntland, and Somaliland, and has a World Bank 2023 projected population of about 18,143,378 million based on a 3.1% annual growth rate with 51% living in urban areas, 23% in rural and 26% in nomadic areas [17, 18]. The country’s climate is predominantly desert, with a coastline stretching over 3,333 km along the Gulf of Aden to the north and the Indian Ocean to the east and south [17]. Despite the protracted period of political instability, Somalia’s economy has made appreciable progress but remained among Africa’s poorest and least developed countries, with a World Bank estimated Gross Domestic Product (GDP) of 10.4 million US dollars and a GDP per capita at approximately $592 in 2022 [19].

Somalia’s health care delivery system is diverse and cuts across all levels of governance, involving multiple layers from the public and private sectors, including the community [20]. The government focused on scaling up essential and fundamental health and nutrition services through the Essential Package of Health Services (EPHS), developed in 2009, and overcoming the crisis of human resources for health, among others [21–23]. TB services are delivered through 111 TB management units (TBMUs), three DR-TB hospitals, three National TB Reference Laboratories (NTRLs), and the community. Every TBMU provides laboratory services, and the three NTRLs support the laboratory network in the country under the supervision of the supernational lab in Uganda. DR-TB services are decentralized and integrated into the TBMUs nationwide. Though the private sector provides the bulk of health services in Somalia through private hospitals and clinics and plays an essential role in TB control, management, and service delivery, their involvement in delivering TB service is still limited [24, 25]. Also in existence is a robust community structure for TB service delivery through the support of community and female health workers who deliver TB services.

Study Population

The study population consists of all patients (males, females, and children accompanied by a guardian) diagnosed and registered for TB treatment within Somalia’s NTP network who attend a sampled facility for a visit during the study period. This includes all patients on first (DS-TB) and second-line drug treatment (DR-TB) patients who were on TB treatment for at least two weeks (14 days), either in the continuation or intensive phase. Because this survey relies heavily on self-reported information, it excluded people with language, auditory, and cognitive impairments, children without a guardian who cannot provide adequate and reliable information, or those not currently on TB treatment. In addition, and considering the prevailing Somalia context, patients receiving treatment from health facilities in security-challenged districts were excluded.

Procedures

Sampling. This study adopted a random cluster-based sampling and the probability proportional to size (PPS) sampling technique to calculate the sample size and for appropriate cluster selection. A TB treatment facility (public and private hospitals, clinics, and health centers) called TBMU represented a cluster in the survey’s primary sampling unit (PSU). In contrast, the individuals on treatment in these clusters were the secondary sampling unit and unit of analysis.

All the 111 TBMUs (clusters) across the seven states with their corresponding reported 2022 TB cases, totaling 18,499, were listed as the sampling frame. Then, TBMUs that did not report any TB cases in 2022 and those that were inaccessible due to insecurity were removed from the sampling frame; these amounted to 15 TBMUs, leaving a total of 96 TBMUs to serve as the survey’s sampling frame. The remaining 96 TBMUs were randomly sorted using a computer-generated command and other computations to determine the required 37 clusters.

Three consecutive steps guided the sample size calculation. The initial sample size, Design Effect (DEFF), and the required minimum sample size were calculated for the study. The exact proportion of households reporting catastrophic spending on health in Somalia could not be established. Therefore, fifty percent was used to hypothesize the proportion (p) of households experiencing catastrophic total costs due to TB disease in Somalia. This is in line with the Somali 2020 Health and Demographic Survey report that 98% of households pay for their health expenses through their income (48%), the selling of assets (11%), borrowing money (14%), and support from friends and relatives (25%) [17]. A formatted Excel template was used to calculate the minimum sample size of 878, which was adjusted upwards to 927 to accommodate non-responses at 5.2%. The output gave an estimated sample size of 927 patients, corresponding to 37 clusters with 25 patients per cluster.

Survey and data collection. The survey organization comprises a core team of eight technical experts (NTP, WHO country office, World Vision, external technical assistance from the WHO), a data manager, a coordinator, and a local survey team to plan, design, and implement the survey. The local survey team comprises 36 interviewers/data collectors (one per cluster) and seven State TB coordinators (one per state) who collected the survey data. The interviewers were trained virtually due to inadequate resources and given Android phones to collect and upload interview information. The training lasted for three days, and each participant’s understanding of the tool was tested through a practical session where they were asked to enter hypothetical information.

The data collection instrument for this survey is a structured, standardized questionnaire adapted from the WHO generic patient cost survey instrument for collecting data from TB patients[16]. It comprises the following five sections with 115 questions: (i) informed consent and inclusion/exclusion criteria for all eligible patients, (ii) Patient information - obtained from TB treatment card before the interview for all eligible patients, (iii) Overview of TB treatments before current treatment, up to five years before the current treatment started for retreatment cases only - administered to patients in intensive phase only, (iv) costs before the current TB treatment for new cases interviewed in the intensive phase only, and (v) cost during current DS-TB/DR-TB treatment for, administered to all eligible patients.

The data collection instrument included questions on socioeconomic position, household composition, employment status, healthcare utilization, hospital visits, time spent and income lost while seeking and receiving care, household assets, costs incurred (direct medical, direct non-medical, and indirect), individual and household income, access to social protection, coping strategies (loans taken and assets sold), and social consequences, including perceived impacts of costs to make up the required number (25) per cluster. An electronic data collection tool was programmed and deployed into the Kobo Toolbox (Kobo Collect). The e-survey tool contains skip patterns, which enabled respondents to be directed to different sections of the survey according to their type of TB and whether they were interviewed during the intensive or continuation phase for ease of operation.

The survey implementation, which started with a pilot phase, lasted about six weeks between 26 December 2023 and 3 February 2024. The pilot exercise enabled the team to identify potential challenges using the tool and assisted in validating assumptions made for sample size calculation, mode and timing of interview, and budget. Ten trained interviewers were deployed to conduct the pilot testing in ten non-survey selected clusters, and the findings from the pilot exercise were used to improve the wording of the questionnaire sequence, structure, and overall survey implementation plan.

Eligible participants were enrolled in the study through random selection from the facility treatment register. Data variables such as demographic and clinical parameters (age, type of TB patient, HIV status, and treatment. duration) were extracted from the facility treatment registers and cards before the interview. While ensuring optimum confidentiality, trained interviewers collected data face-to-face over one hour. In facilities with high patient turnout during clinic visits, particularly for drug-susceptible TB, consecutive eligible patients were interviewed as they visited the clinic until the sample size was completed. In contrast, in low-volume facilities, they were randomly selected from the register. To ensure adequate representation of DR-TB patients, all participants who are DR-TB patients were selected as they showed up.

Ethical approval

The study received approval from the Research & Ethical Committee at the Ministry of Health Somalia with reference number Ref/MOHHS/DGO/0982/December 2023. Written paper informed consent signature with unique survey numbers was received from eligible participants through signing and thumb printing and stored with the Principal Investigator for safekeeping and retrieval. The guardians of children (below 15 years) provided written informed consent, while adolescents who could comprehend the purpose and procedures of the survey provided informed written consent. Consent was voluntary and obtained by the interviewer in a non-coercive manner after an explanation was provided in a language the participants could comprehend. Participants can opt-out anytime; no incentive was provided, and their personal details were protected.

Analysis

Data processing. Data cleaning and analysis were implemented in R statistic software, version 4.3.1. It included separating and linking patient-level repeat records, such as pre-diagnostic visits and hospitalization information, to the primary patient record via unique patient identifiers. The WHO R script was adapted for Somalia’s instrument design and enabled range and format checks for various variable types, mainly cost and time variables [26]. Also, consistency checks were conducted across questionnaire sections, including formatting variable names and labels. Cleaned data were analyzed along the survey objectives, and missing data were identified and imputed, particularly those relating to the cost extrapolations for patients on first line and second-line treatment throughout the expected treatment period per WHO guidance on analyzing TB cost survey data [16].

Analysis process. The analysis started with basic descriptive statistics and cross-tabulations describing some selected participants’ socio-demographics, treatment characteristics, and the country’s TB care model. The analysis process summarized categorical variables using absolute frequencies (proportions) and continuous variables using medians, inter-quartile ranges (IQR), means, standard deviations (SD), and 95% confidence intervals (95% CI) stratified by drug sensitivity status (DS-TB or DR-TB) and gender (female or male). The total costs incurred during TB treatment, the estimated hours participants lost seeking care, and the delays experienced in seeking care were calculated. Also, the analysis computed the proportion of TB-affected households experiencing catastrophic costs and the proportion of households experiencing “dissaving,” including assessing the cost drivers for seeking TB care, coping strategies implored, and the social consequences faced for contracting TB in Somalia. All cost and income data were collected and computed in United States dollars (USD).

Estimation of the costs of a TB episode. The analysis assessed self-reported income for participants (individuals) and their households, estimated the cost of a TB episode, and valued the time each participant spent seeking TB diagnosis, treatment, and care; assessed income by asking participants about their individual and household income before and after TB diagnosis. The estimated costs of a TB episode were calculated as the total costs (direct medical, direct non-medical, and indirect) per TB episode starting from the onset of symptoms to TB treatment completion. The direct medical costs include costs reported for day charges for hospital admissions, consultation, radiography and other imaging, laboratory tests, other procedures, TB medicine, other medicine, and other medical costs. The direct non-medical costs included all travel costs, food during health care visits or hospital stays, nutritional supplements during health care visits or hospital stays, and other non-medical expenses (including accommodation and food). For this study, the indirect cost was viewed as the productivity and economic costs incurred by the survey participants or their households due to TB healthcare visits and hospitalization during TB episodes and calculated using the output approach (self-reported household income before TB minus self-reported household income during TB treatment or at the time of interview) [16,27].

Estimation of catastrophic costs and dissaving. Furthermore, following WHO global monitoring, the percentage of Patients in TB care and their households that experienced catastrophic total costs was defined and calculated as >20% of annual household income. After that, it was determined whether the participants and their households incurred catastrophic costs due to TB at this threshold by assigning them a binary number [28]. Then, the proportion of those who incurred catastrophic costs due to TB illness was calculated in percentage and reported as the proportion of TB-affected households experiencing catastrophic costs. In addition, the coping strategies used (defined as whether the participant or their household received loans or sold their assets) were analyzed as binary measures to determine whether participants or their households adopted any coping strategy. The dissaving strategies in the form of loans (borrowed money) or sales of assets were calculated.

Factors associated with tuberculosis costs. Lastly, the risk factors associated with TB-related costs incurred by patients in TB care and their households were identified by conducting univariate and multivariate analyses using logistic regression and reported as odds ratios, 95% confidence intervals, and the corresponding p-values.

Of the 927 eligible patients recruited for the study, 901 (97.2%) agreed to participate and were interviewed, of which 710 (78.8%) had complete cost records. The sociodemographic and clinical characteristics of the study population are shown in Table 1. The median age was 32 [Inter-quartile range (IQR) 26] years, 78 (8.7%) were under the age of 15 years, and there were more male respondents, 565 (62.7%) than women, 336 (37.3%). Of the participants surveyed, 764 (84.8%) had DS-TB, 137 (15.2%) had DR-TB, 758 (84.1%) had pulmonary TB, 143 (15.9%) had extrapulmonary, 808 (90%) knew their HIV status, 507 (56%) were in the continuation phase during the interview, and 24 (3%) had a history of previous TB treatment. Almost all, 99% (900) of the patients in TB care who participated in the study had no form of health insurance or safety net to cushion the cost of TB treatment services. Other socio-demographic and clinical parameters are presented in Table 1.

Table 2 shows the key model of care variables reported in the survey. Overall, 214 (24%) respondents reported at least one hospitalization event in their current treatment phase, either previously admitted (5.4%) or currently admitted (18%), with an average hospitalization time of 60 days (95% CI: 30 - 173), underscoring the critical role hospital admission plays in the Somalia TB model of care. Also, the average number of visits before TB diagnosis and TB-related follow-up visits during the current treatment phase was 1.3 (95% CI: 1.3 - 1.3) and 2.7 (95% CI: 2.0 - 3.5), respectively, with an average treatment duration of two months in the intensive phase and four months in the continuation phase. The median number of days delayed before initiating TB treatment following TB diagnosis was 7.31 (IQR: 19.03) days and 11.33 (IQR: 36.32) weeks after the onset of the participant’s first TB symptoms (Table 2).

From Table 3, the average cost incurred for a TB episode in Somalia was $200 (95% CI: 72 - 328). The direct non-medical cost had the highest average cost of $82 (95% CI: 23 - 140), accounting for 41% of the total cost, followed by the indirect cost at $60 (95% CI: 15 - 105), which accounted for 30% of the total cost and then direct medical cost at $59 (95% CI: 20 - 97), making up the remaining 29%. Overall, the average costs for both types of TB were relatively the same, with DS-TB at $201 (95% CI: 71 - 330) and DR-TB at $199 (95% CI: 51 - 347). The post-diagnostic cost, particularly the direct non-medical cost of the continuation phase ($181 [95% CI: 94 - 268]), had the highest average cost compared to any other category in the pre-diagnostic or intensive phase of treatment. In the intensive phase, the average direct non-medical costs at $118 (95% CI: 29 - 208) is way higher than the direct medical cost at $30 (8.9 - 53). Before diagnosis, the average direct medical cost of $61 (38 - 85) is higher than the non-medical cost of $47 (30 - 64), even for DS-TB and DR-TB. Overall, the average cost of accessing TB was relatively the same for DS-TB and DR-TB but higher for DS-TB compared to DR-TB before diagnosis and during the post-diagnostic phase of TB treatment.

Table 1: Characteristics of survey participants, Somalia, 202

Table 2: Key Model of Care Variables for TB (Hospitalization, treatment duration, and delay), Somalia, 2024.

Table 3: Cost incurred by patients in TB care and their households by phase of treatment and cost type, Somalia, 2024

Table 4 shows the changes in household income due to TB and demonstrates the effect of contracting and treating TB on the household’s income. Overall, the average estimated household net income from labor-related activities per month before contracting TB was $142 (95% CI: 83 - 201), reduced to $115 (95% CI: 74 - 156) at the time of diagnosis and to $88 (95% CI: 59 - 117) at the time of interview. To be able to access TB treatment and care services and cope with the financial effects of TB, 42% (379) of patients in TB care and their households adopted one or more dissaving strategies in the form of loans or the sale of assets (Table 5). TB-related catastrophic costs had a significant impact on the social life and financial status of patients in TB care in Somalia. Of the total survey respondents, 379 (42%) reported that accessing TB services greatly affected their social life and finances, including well-being, and is worse among patients diagnosed with DS-TB (46%) compared to DR-TB (15%). In addition, 71% (640) households of survey participants reported that they were poorer, among which 23% (145) became much poorer; this is more significant among those diagnosed with DS-TB.

Table 4: Changes in household income due to TB, Somalia, 2024

Table 5: Coping strategies and impact of catastrophic costs on the social life and finance of TB patients, Somalia, 2024

The proportion of patients in TB care and their households that experienced TB-related catastrophic costs was 68% (95% CI: 64% – 71%). The value was slightly higher among DS-TB patients (69% [95% CI: 65% – 73%]) than those who had DR-TB (62% [95% CI: 52% – 71%]) at the 20% threshold (Figure 1). The proportion of TB patient and their households facing TB-related catastrophic costs were measured at different cut-off points through sensitivity analysis. It showed that the proportion increased to 73% at a 10% threshold and reduced to 58% at a 40% threshold (Figure 1).

The result of the multivariate analysis to investigate the risk factors associated with catastrophic costs among patients in TB care calculated the crude and adjusted odds ratios, CI, and statistical significance across study variables using a cut-off of 20% (Table 6). The Southwest state showed higher significant catastrophic costs than the Banadir state (Adjusted OR 0.15, 95%CI: 0.03–0.72). There is no significant difference between TB-related catastrophic costs among age bands, sex (males and females), occupation (unemployed and employed), recorded HIV status (negative, positive, and unknown, category of health facility (private and public, TB sensitivity (DS-TB and DR-TB), household size, social impact (no or yes), and treatment delay (4 weeks or less and > four weeks).

Despite the challenging operating environment, Somalia successfully conducted its first national survey to estimate the proportion of TB-related catastrophic costs among patients in TB care (and their households). The survey findings reported the magnitude and main drivers of the various costs incurred by patients in TB care and their families before and during TB treatment. It establishes a baseline for estimating and monitoring the third top indicator of the WHO End TB strategy, which, in turn, allows the government to plan how to eliminate catastrophic costs due to TB in Somalia as captured in its National Strategic Plan [20]. Additionally, it investigated and quantified the direct medical, direct non-medical, and indirect costs of a TB episode for DS-TB and DR-TB in Somalia. It revealed that TB services are provided at public and private facilities but about nine out of every ten survey participants received their TB treatment from public facilities, which is in keeping with routine program data [9]. For most parameters assessed, the clinical characteristics of DS-TB patients differ from those of DR-TB but not entirely between males and females. Consistent with the country’s notification data, most of the participants were new TB cases; nine out of every ten had their HIV status documented, with a negligible TB/HIV co-infection rate [9].

Table 6: Risk factors associated with high catastrophic costs among Patients in TB care and their households, Somalia, 2024

This study’s protocol adhered strictly to the WHO guidance on conducting TB cost surveys [16]. However, the study encountered some limitations that it tried to maneuver around without compromising the study's integrity and quality. Study participants from private health facilities accounted for less than 6% in keeping with the proportion of TB cases notified by the private health facilities providing DOTS services in Somalia, which could have affected the TB catastrophic cost outcome. Security was a significant concern in Somalia at the time of the survey, and there was ongoing conflict in six districts, necessitating the exclusion of some health facilities. This exclusion could have affected the study result and limited the survey team’s ability to access hard-to-reach communities that may be underserved. This study relied on the participant’s ability to recall their income, expenses, and cost history of accessing TB services. With a high proportion of participants falling into the category of no education or low-level educational standards, their ability to recall this information may have been challenged, potentially leading to recall bias in the study. The inability to conduct in-person or face-to-face training for data collectors and interviewers due to limited resources may also have significantly affected the data collection process despite implementing a quality assurance mechanism to improve the data collection quality for the survey. It could not adequately collect and analyze qualitative information on delays in service delivery, such as diagnosis, treatment, and follow-up. It suggests a need for future studies to understand better the health-seeking behavior of the population regarding TB and the health system factors influencing delays in accessing care when first observing TB symptoms and delays in diagnosis and initiating TB treatment.

Patients in TB care lost significant time traveling seeking or accessing TB diagnosis, treatment, and care and a considerable number of days on admission, suggesting a sub-optimal patient-centered care model. Overall, patients visit the health facility more than once before being diagnosed, approximately 11 weeks before starting TB treatment after noticing their first TB symptoms, and seven and a half days before starting TB treatment after a TB diagnosis was made. This is in keeping with findings from other studies [29,30]. This study suggests that the model of TB care in Somalia encourages patients to spend more time on admission, thereby incurring high direct and indirect costs. For instance, the median number of days on current admission (intensive and continuation phase) was 60 and up to 105 days among DR-TB [5,6,29,31]. Also, the percentage reduction in average income before contracting TB and at the time of the interview was as high as 61%, underscoring the impact of contracting TB and accessing TB services on patients’ finances.

Though TB services are free in Somalia, this survey revealed that as high as 68% of Patients in TB care and their households experience TB-related catastrophic costs, undermining the country’s efforts to reduce the financial impact of TB on patients. This value is high and comparable with findings from Myanmar (60%), Viet Nam (63%), Lao PDR (63%), Ghana (64%), Mongolia (69%), Niger (71%), and Nigeria (71%) [32–35]. The value is higher than those reported from some eastern African countries (Kenya [27%], Tanzania [45%], and Uganda [53%]), some other African countries (Egypt [24.1%], Lesotho [19%], and South Africa [56%]), and some Asian countries like China (37.1%) and India (32.4%) [7,32,36][5,37,38]. Also, the value from Somalia is relatively comparable to but higher than other low-income countries such as Uganda (53%, Mali (49%), Burkina Faso (54%), and Niger (71%) [32]. Unlike the findings from other studies, a higher proportion of DS-TB patients (69% [95% CI: 65% – 73%]) suffered more catastrophic costs than DR-TB patients (62% [95% CI: 52% – 71%]) [39], which may be attributed to the social support provided to DR-TB patients through the Global Fund grant (cushioning the cost of traveling and buying food) - the observed difference was not statistically significant.

Our study found that the high catastrophic cost of accessing TB services had far-reaching consequences on patients in TB care and their families. The average estimated household net income from labor-related activities per month before contracting TB was reduced by 38% during the TB episode and is likely to be reduced further before treatment completion. In addition, TB significantly affected the social life, finances, and overall well-being of almost one out of every two of the study participants in various ways, particularly those with DS-TB, higher than that observed in Uganda and Kenya [7,40]. Also, a little above three third of participants and their households became poorer than they were before contracting TB, higher than that reported in other studies [28,34]. To cope with this economic burden, almost one in every two participants reported that they took loans or sold their assets, of which two out of every three participants collected a loan and one out of every three participants sold their assets, keeping with findings from other studies [28,33,38].

Analysis to determine the risk of incurring high TB-related catastrophic costs shows that the state of residence increases the risk of incurring a higher TB-related catastrophic cost in Somalia. In this survey, patients in TB care residing in the Southwest state had the highest odds of facing TB-related catastrophic costs. Comparable to other reports, our study did not observe any significant association between age, sex, educational or employment status, household size, social impact, insurance status, treatment delay, and TB-related catastrophic costs [30,36,41,42].

The findings from our study bridged a vital gap as it provided Somalia with information on the proportion of TB-affected households experiencing catastrophic and baseline data to report and monitor the WHO End TB strategy recommended indicator on the proportion of patients in TB care and their households facing catastrophic costs. It highlights critical programmatic gaps in which routine program monitoring and supervision may not be identified even if well implemented. For instance, this study suggested the need for the Somalia NTP to review its model of TB care as the model systematically makes patients incur more out-of-pocket expenses accessing TB services. Also, our study underlines the lack of social protection or health insurance for over 99% of patients in TB care, which could further explain the huge burden of TB-related catastrophic costs and dissaving. However, DR-TB patients receive some form of psychosocial support through the Global Fund grant and other resources. A substantive number of households reported that contracting TB had a significant impact on their social life, well-being, and finances, underscoring the unseen burden this disease brings to those who are affected by it.

This study found that TB patients and their households experience a substantive financial burden accessing TB services in Somalia, and the provision of social protection remained sub-optimal. Patients experience more direct non-medical costs than other types of costs, particularly during the continuation phase of their treatment. This experience pressures patients to borrow or sell their assets, thereby becoming poorer than they were before contracting TB. The findings from this study suggest that the NTP should review its current model of TB care to encourage ambulatory care and adopt a more differentiated approach to TB care, including providing a sustainable and equitable social protection program to TB patients and their families.

Author Contribution

Joseph Kuye, Ireneaus Sebit Sindani, Muktar Abdi Shube, Mohamed Jafa alah, Abukar Ali Hilowle, Vianney Rusagara, Faith Ngima, and Michael Abaasiku conceptualized and designed the study. Joseph Kuye, Ireneaus Sebit Sindani, Muktar Abdi Shube, Mohamed Jafa alah, Abukar Ali Hilowle, Vianney Rusagara, Faith Ngima, and Michael Abaasiku participated in data acquisition. Joseph Kuye, Ireneaus Sebit Sindani, and Stephen Balogun conducted data analysis. Joseph Kuye and Ireneaus Sebit Sindani wrote the original draft of the manuscript. Ines Garcia Baena, Barinaadaa Afirima, and Abiodun Hassan proofread the manuscript. All authors read and approved the manuscript.

Acknowledgement

Our acknowledgment is to all participants who agreed to participate in the survey, the interviewers and healthcare workers who supported the survey activities at their facilities, WHO Somalia, WHO Geneva, World Vision, Ministry of Health and Human Services, Somalia, and the Global Fund, who provided the funding for the survey.

Data Availability

The datasets used and/or analysed for this study are available from the corresponding author on reasonable request.

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Tables 1 to 6 are available in the Supplementary Files section.

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Households of Tuberculosis (TB) patients face high TB-related costs: Somalia Experience

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