The authors declare they have no competing interests.
Conceived and designed the experiments: SL BD. Performed the experiments: SL AA EMO ACH LT. Analyzed the data: SL. Contributed reagents/materials/analysis tools: SL AA EMO SA MG FK BD. Wrote the paper: SL.
Free tuberculosis control fail to protect patients from substantial medical and non-medical expenditure, thus a greater degree of disaggregation of patient cost is needed to fully capture their context and inform policymaking.
A retrospective cross-sectional study was conducted on a convenience sample of six health districts of Southern Benin. From August 2008 to February 2009, we recruited all smear-positive pulmonary tuberculosis patients treated under the national strategy in the selected districts. Direct out-of-pocket costs associated with tuberculosis, time delays, and care-seeking pattern were collected from symptom onset to end of treatment.
Population description and outcome data were reported for 245 patients of whom 153 completed their care pathway. For them, the median overall direct cost was USD 183 per patient. Payments to traditional healers, self-medication drugs, travel, and food expenditures contributed largely to this cost burden. Patient, provider, and treatment delays were also reported. Pre-diagnosis and intensive treatment stages were the most critical stages, with median expenditure of USD 43 per patient and accounting for 38% and 29% of the overall direct cost, respectively. However, financial barriers differed depending on whether the patient lived in urban or rural areas.
This study delivers new evidence about bottlenecks encountered during the TB care pathway. Financial barriers to accessing the free-of-charge tuberculosis control strategy in Benin remain substantial for low-income households. Irregular time delays and hidden costs, often generated by multiple visits to various care providers, impair appropriate patient pathways. Particular attention should be paid to pre-diagnosis and intensive treatment. Cost assessment and combined targeted interventions embodied by a patient-centered approach on the specific critical stages would likely deliver better program outcomes.
With 8.7 million new cases worldwide in 2011, 1.4 million deaths, and 310,000 incident cases of multidrug-resistance, the management of tuberculosis (TB) remains a big challenge.
Despite these encouraging results, several bottlenecks persist such as financial barriers to access to care and too many treatment dropouts.
Therefore, we closely studied the course of the long and complex care and control of TB suspects and patients. Our objectives were, from the user’s perspective, to describe the full range of disaggregated out-of-pocket direct costs (medical and non-medical) associated with tuberculosis, and to identify critical stages in order to determine any area for better patient management.
The study complies with international guidelines for research and was approved by the institutional review board of the Institut Régional de Santé Publique de Ouidah i.e., the Coordination de la recherche et des projets (BP 834 Ouidah, Benin). Informed consent was systematically requested. All subjects participating in the study signed a voluntary consent form after being given all the information necessary and sufficient to make an informed decision regarding their participation in this study.
The study was conducted in six health districts of Southern Benin (i.e., Cotonou, Porto Novo, Come, Klouékanmé-Toviklin-Lalo, Pobé-Adja-Ouéré-Ketou, and Covè-Zagnanado-Ouinhi), covering a population of about 1.3 million people. Using convenience sampling method, the study sites were selected from Southern Benin that comprises health areas with the highest incidence rates for smear-positive TB cases (ranged from 24 to 59 per 100,000 population in Southern Benin versus only 13 to 14 per 100,000 population Northern Benin), highest density rates (ranged from 76 to 538 inhabitants per km2 versus only 30 to 35 inhabitants per km2), and for which we had an extensive knowledge of the healthcare networks and local communities
Since 1993, based on directly observed treatment, short-course (DOTS), the national tuberculosis control program (NTP) is fully integrated in health facilities.
Subsequent to our pilot study conducted in Burkina Faso,
Involving clinical heads to facilitate the selection process of the participants allowed to be comprehensive and to capture the target population. Similarly, several precautions were implemented at the different stages of the process to ensure best quality data.
Due to the study design, enrollment rate was 100% (
All participants (245/245) reported research outcomes from onset of their TB symptoms to intensive treatment while a smaller proportion of participants (153/245) reported research outcomes for their overall care pathway.
Itemized cost-of-tuberculosis assessment requested exhaustive statement of medical out-of-pocket expenses (e.g., the charges made for examinations, laboratory tests, drugs and hospital care, and consultation fees), and non-medical out-of-pocket expenses (e.g., services provided by traditional healers, traditional remedies, religious offerings, gifts for those who assisted in procuring and administrating care, food supplements or travel costs). By identifying their family events or other key dates, patients could relate the cost items in every successive stages of the TB care pathway. Expenses reported in-kind were converted into local currency during the interview. All cost items were summed to obtain the total cost, by stages and for the overall care pathway. Patients also commented on their socioeconomic status, care and care-seeking behaviors, time delays and major obstacles to access care. Conversion from the local currency to US dollars (USD) using OANDA Rates gave a mean price of USD 1 = 482.1 West African CFA Francs.
The Epi-Info (CDC, Atlanta, version 3·5·1) was used for data capture and cleaning. Data management and statistical analysis were processed with the IC/STATA 12 for Windows statistical package (StataCorp LP, USA). Continuous variables were described with means (and standard deviation) or medians (and interquartile values), and discrete variables with frequencies (and percentages). We operated the two-sample Wilcoxon rank-sum (Mann-Whitney) statistical test to compare distributions across sub-group categories of participants.
Study constraints occurred with pre-diagnosis stage in which 63 patients failed to recall the breakdown of some of their expenses for this particular period (especially food and transportation). Then they were asked to identify the types of expenses incurred and the corresponding total amounts. To preserve those data for analysis for those patients, we distributed linearly their expenses over the relevant cost items.
The average age of the participants was 35 years (SD = 13.2). The study included 146 males (59.6%). Of the sample, two thirds (66%) lived below the poverty threshold of USD 2.50 per person per day. The demographic and clinical patterns of the patients are presented in
Category | Subcategory | Result (% (n)) |
Gender | Male | 59.6 (146) |
Female | 40.4 (99) | |
Age (missing = 1) | Age (Mean (SD)) | 35.0 (13.2) |
Household size | <3 | 40.4 (99) |
33.9 (83) | ||
>5 | 25.7 (63) | |
Poverty | Living below US$ 1.25 per person per day | 40 (98) |
Living above US$ 1.25 and below 2.50 per person per day | 26 (64) | |
Living above US$ 2.50 per person per day | 44 (83) | |
Residence | Urban | 64.5 (158) |
Rural | 35.5 (87) | |
TB treatment category | New cases | 91.8 (225) |
Retreatment cases | 8.2 (20) | |
TB/HIV status (missing = 44) | Coinfected | 15.7 (36) |
Out of the 245 patients, overall median and interquartile out-of-pocket payments was USD 163.00 (USD 78.00–320.30) per patient. For the 153 “treatment success” cases, overall median out-of-pocket cost was slightly higher with USD 182.90 (USD 100.40–353.70) per patient.
Distributions of cost were widely spread. No statistical difference has been showed between new cases and retreatment cases (P = 0.8797). On the other hand, urban dwellers were substantially more likely to spend a higher overall direct cost than rural residents (P<0.0001).
An analysis of the breakdown of the care pathway highlights the cost burden related to every stage of the TB patient’s pathway. Nature of payments, duration of stages, and care-seeking behaviors were specifically assessed for the successive stages (i.e., pre-diagnosis, diagnosis, treatment initiation, intensive treatment, and continuation treatment). The highest burden was likely in pre-diagnosis and intensive treatment, which can be qualified as the most critical stages of the patient care pathway (
Category | Participants |
Share of overalldirect cost acrossstages (%) |
Direct cost(in USD), All | Direct cost(in USD), Urban | Direct cost(in USD), Rural | Regionalcomparison |
Stage of thecare pathway | n1/n2 (%) | Median (iqr) | Median (iqr) | Median (iqr, n) | Median (iqr, n) | P-value |
Pre-diagnosis | 228/245 (93.1) | 38.2 (14.0–62.1) | 43.0 (14.5–118.2) | 62.2 (15.6–145.2, 149) | 26.0 (10.4–67.4, 79) | 0.0009 |
Diagnosis | 241/245 (98.4) | 12.3 |
13.5 (9.7–34.6) | 12.4 (9.7–20.2, 156) | 22.8 (9.3–76.7, 85) | 0.0077 |
Treatmentinitiation | 184/245 (75.1) | 1.5 |
2.1 (1.0–4.1) | 1.7 (1.0–3.7, 123) | 2.1 (1.2–4.1, 61) | 0.3905 |
Intensivetreatment | 227/245 (92.7) | 28.6 |
43·4 (20.7–95.4) | 55.6 (24.9–114.1, 153) | 27.0 (12.4–55.5, 74) | <0.0001 |
Continuationtreatment | 127/153 (83.0) | 13.3 (2.4–28.5) | 16.6 (4.1–68.5) | 29.9 (6.2–95.8, 79) | 11.1 (4.1–41.3, 48) | 0.0226 |
Total | 153/153 (100.0) | – | 182.9 (100.4–353.7) | 256.4 (133.8–387.3, 95) | 110.3 (56.0–218.0, 58) | <0.0001 |
Median direct costs ranged from USD 2.10 per patient for treatment initiation to USD 43.40 per patient for intensive treatment. Pre-diagnosis and intensive treatment showed the highest median costs in both regions. Rural residents also incurred high burden during diagnosis stage.
*n1 = number of patients with direct cost >0 per stage; n2 = number of patients respectively who went through up to the intensive treatment stage (245), and who went through the entire care pathway (153).
**The median (iqr) share of overall direct cost across stages by region was: 44.0% (14.1–67.6) for pre-diagnosis, 8.5% (4.3–19.3) for diagnosis, 1.1% (0.4–2.9) for treatment initiation, 30.2% (16.2–49.8) for intensive treatment and 15.4% (2.0–29.5) for continuation treatment among urban residents, and respectively 32.1% (14.1–51.7), 27.3% (11.4–52.4), 2.2% (0.9–5.7), 22.2% (13.2–41.3) and 8.6% (3.4–22.7) among rural residents.
***Distributions of proportion significantly different across region (P<0.05).
Category | Sub-category | Occurrence | Direct cost(in USD), All | Direct cost(in USD), Urban | Direct cost(in USD), Rural | Regionaldifference |
Stage of carepathway | Cost items | % of patients | Median (iqr, n) | Median (iqr, n) | Median (iqr, n) | P-value |
Pre-diagnosis | Traditional healer | 25.3 | 30.1 (10.5–83.0, 62) | 31.1 (12.4–103.7, 39) | 24.9 (4.1–51.9, 23) | 0.1635 |
Self-medicationand spiritual remedy | 68.6 | 14.5 (7.2–41.5, 168) | 20.74 (9.8–62.2, 100) | 10,4 (6.2–20.7, 68) | 0.0023 | |
Travel costs | 59.2 | 10.4 (4.1–31.1, 145) | 9.0 (3.3–24.9, 95) | 11.0 (7.3–47.7, 50) | 0.0523 | |
Diagnosis | Medication | 38.4 | 31.1 (10.4–77.3, 94) | 31.1 (13.5–103.7, 38) | 22.8 (7.8–57.0, 56) | 0.1913 |
Sputum-smear microscopy | 62.0 | 1.0 (1.0–1.0, 152) | 1.0 (1.0–1.0, 145) | 1.2 (1.0–1.2, 7) | <0.0001 | |
Chest X-rays | 60.4 | 6.2 (6.2–6.2, 148) | 6.2 (6.2–6.2, 135) | 10.4 (9.3–21.8, 13) | <0.0001 | |
Other medical costs(fees, additionalexamination) | 78.4 | 2.1 (2.1–2.1, 192) | 2.1 (2.1–2.1, 135) | 1.5 (1.0–8.3, 57) | 0.0858 | |
Travel costs | 82.0 | 4.1 (2.1–10.4, 201) | 3.4 (2.1–6.2, 121) | 6.7 (3.7–20.7, 80) | <0.0001 | |
Treatmentinitiation | All costs | 75.1 | 2.1 (1.0–4.1, 184) | 1.7 (1.0–3.7, 123) | 2.1 (1.2–4.1, 61) | 0.3905 |
Intensivetreatment | Medical costs | 27.3 | 10.0 (3.7–20.7, 67) | 10.0 (4.1–19.7, 53) | 7.2 (3.1–20.7, 14) | 0.7812 |
Travel and food | 89.0 | 41.5 (17.6–92.9, 218) | 52.7 (20.7–112.0, 149) | 31.1 (14.5–55.5, 69) | 0.0008 | |
Continuationtreatment | Medical costs | 4.6 | 12.4 (7.3–20.5, 7) | 12.4 (8.3–17.6, 5) | 12.4 (4.3–20.4, 2) | – |
Travel and food | 81.0 | 16.7 (4.1–66.9, 124) | 31.1 (4.6–95.8, 77) | 10.4 (3.1–38.6, 47) | 0.0126 |
Most patients accumulated medical or non-medical out-of-pocket expenses at every single stage of their care pathways. The greater burdens relied on non-medical expenses during pre-diagnosis (traditional spending) and during intensive treatment (travel and food) while medical expenses were dominant during diagnosis stage. At the regional level, disparities between urban and rural residents were concentrated on the non-medical expenses.
From onset of symptoms to the first consultation (i.e., pre-diagnosis period, also referring to patient delay), 93.1% of the 245 patients were already facing direct costs associated with TB. The median burden amounted USD 43.00 per patient. A large majority of patients reported expenses for modern or traditional self-medication (68.6%) and travel (59.3%), and much less for traditional healers’ services (25.3%). However, the median expense incurred were USD 14.50 for self-medication, USD 10.40 for travel, and USD 30.10 for traditional healers. At the end, half of the patients had spent 38.2% of their overall direct costs during this stage. Cost-burden was more severe among urban dwellers. We can also say that out of the 244 (one missing data) individuals, less than one third (31.6%) consulted a public provider within a month. The patient delay in total ranged from less than a week to more than three weeks.
Almost all the patients (98.4%) faced direct costs during the diagnosis period (i.e., from the first visit to diagnosis confirmation). The median burden was USD 13.50 per patient. Most patients reported expenses for travel (82.0%), consultation fees or additional examinations (78.4%), sputum microscopies (62.0%), or X-rays (60.4%), and the median expenditure for which amounted to USD 4.10, USD 2.10, USD 1.0, and USD 6.20 per patient, respectively. A smaller proportion of patients (38.4%) spent much higher amounts on medication (USD 31.10). This means half of the patients incur a cost of up to 12.3% of their overall direct cost. Cost-burden was much heavier among rural residents with a median of USD 22.80 and 27.3% of their overall direct cost. On the effectiveness of patient care, 55.3% of patients (135) were diagnosed with TB within a week, leaving a large number facing a provider delay longer than one week. Among all, 30.2% of the patients (74) resorted to private care before having met a public provider. Moderately, 131% (32) were hospitalized in order to diagnose TB with a median length of stay of three days (three to six). Among those who were not hospitalized, 11.5% of the patients (24) consulted public providers more than four times with a median of seven for care utilization (five to seven).
Regarding treatment initiation, which refers to the period from announcement of the diagnosis to the start of treatment, 75.1% faced direct costs. The median burden was USD 2.10 per patient. It corresponded to a median share of overall direct cost of 1.5%. To the question “Have you faced a treatment delay,” 67.2% of patients spontaneously answered “yes.” After analysis of “travel to NTP providers,” it turns out that 84.9% of patients reported multiple (up to four) round trips. However, the mean treatment delay was two days (SD = 1.9).
Out of the 245 patients, 92.7% faced direct cost. The median burden was USD 43.40 per patient. Most patients (89.0%) faced median non-medical expenditures (travel or food) of USD 41.50. About a quarter (26.5%) faced median treatment expenditures (including drugs for minor illnesses) of USD 10.00 per patient. The median share of overall direct cost was 28.6%. In addition to this financial burden (reported by 26.6% of patients), other complaints were observed such as fatigue or suffering (30.8%), inactivity (11.1%), feeling of hunger or disturbance (9.4%), and poor access to BMUs or care providers (3%). Despite these challenges, less than one tenth discontinued their intensive treatment (6.9%; 17 patients). Some of the reasons for interrupting the drug regimen were as follows: one reported strike of health facilities, another ban on taking drugs invoked by the traditional healer; and the others reported occasional and personal inconveniences such as family event or inability to access the health center due to bad weather or vehicle breakdown. This stage lasted more than the two-month prescribed period for very few patients (2.6%).
Out of the 153 patients who went through the entire care pathway, 83.0% faced direct cost during continuation treatment. The median burden was USD 16.60 per patient for this four-month stage. A small majority of patients (50.6%) faced non-medical expenditures (travel or food), which achieved a median cost of USD 16.70. Only 2.9% faced treatment expenditures that amounted to a median cost of USD 12.40. Half of the patients spent 13.3% of their overall direct cost during this stage. On the performance of patient management, discontinuity in the drug regimen occurred for 6.6% of the patients. While financial barriers were reported by 27.8% of patients and regarded as principal obstacles even at this stage, other factors existed such as fatigue or suffering (22.5%), business interruption (11.3%), feeling of hunger (5.3%), geographic access (3.8%), or seclusion (0.8%).
The study showed very few households with no TB-related expenditure. The magnitude of these out-of-pocket payments reached a median of USD 256.40 per patient among urban residents and USD 110.30 per patient among rural residents, including medical and non-medical costs. In such disadvantaged socio-economic groups (i.e., high poverty rate reported), this amount may represent a substantial portion of their monthly income (or even exceed it) and thus weighs heavily on the household. From a user’s perspective, we showed several issues leading to genuine financial barriers. Overall financial burden complied with results already shown in the literature
In a recent review of the literature covering 30 articles from sub-Saharan Africa, Barter et al
Countries should consider context-oriented policy initiatives that are evidence-based informed and guided by the patient needs. We raised some useful issues to promote such initiatives for TB control. During pre-diagnosis, one in four spent relatively large amounts on traditional healers in Benin. A third of the Beninese patients (32%) and two-thirds of the Burkinabe patients (57%) came to the first line healthcare provider and consulted in the first month of diagnosis. Likewise, delays worsened the burden of TB and contributed to potentially avoidable costs.
Some study limitations can be reported. Firstly, a rural-urban setting was used to capture a wide variety of all the potential direct out-of-pocket costs associated with TB. Although costs are substantial throughout the sub-region, the severity of the problem tends to differ. In addition, costs were more widely spread among urban residents than among rural residents. Beyond the urban-rural gap, further studies should be conceived to grasp more local specificities. Secondly, to achieve accuracy and completeness, this type of study requires extreme caution. Quality of the data has been one of our primary concerns but recall bias should be considered and particularly for patients combining multiple health problems. A routine survey targeted on key issues could be very informative. Finally, further analyses such as to examine the relationship between the amount spent on out-of-pocket payments to household income, or documenting indirect costs and strategies to cope with direct costs are needed. Such analyses have not been reported here.
The findings confirm that financial and organizational barriers to successful care seeking and treatment of TB–that also fall under the national “free” TB strategy–remain a major issue for TB-affected households. As argued by the authors of recent systematic reviews, evidence from our comprehensive pathway analysis answers the call for better documentation of the specific problems of African countries. A thorough, systematic study of patient choices may suggest evidence informed solution scenarios to improve their management. Critical stages regarding financial standpoints were likely pre-diagnosis, diagnosis (in rural area) and intensive treatment. Time delays (both patient and health system delays) and their cost implications contributed to the failure to suspect, diagnose, and treat TB early enough. Particular attention should also be paid to hidden costs that negatively affect the patient care pathway. Greater success of a long-course treatment relies on more integrated, context-oriented and patient-centered interventions,
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We thank all participants, health workers, NTP managers and research staff members for their considerable personal involvement in this research project.