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| ORIGINAL RESEARCH REPORT |
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| Year : 2021 | Volume
: 18
| Issue : 4 | Page : 179-185 |
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Direct cost of treating childhood cancer in Lagos, Nigeria: A tale of financial inaccessibility to care
Adedayo O Joseph1, Adeseye M Akinsete2, Opeyemi M Awofeso1, Onyinye D Balogun3, Kanyinsola A Oyeyinka4, Adedayo A Onitilo5
1 NSIA-LUTH Cancer Center, Lagos University Teaching Hospital, Lagos, Nigeria
2 Department of Pediatrics, Lagos University Teaching Hospital, Lagos, Nigeria
3 Department of Radiation Oncology, Weill Cornell Medicine/New York-Presbyterian, New York, NY, USA
4 Department of Health Policy and Management, Harvard T. H. Chan School of Public Health, Boston, Massachusetts, USA
5 Marshfield Clinic Health System, Marshfield, Wisconsin, USA
| Date of Submission | 05-Dec-2020 |
| Date of Acceptance | 10-Nov-2021 |
| Date of Web Publication | 09-Dec-2021 |
Correspondence Address:
Dr. Adedayo O Joseph
Lagos University Teaching Hospital, Idi-Araba, Lagos
Nigeria
 Source of Support: None, Conflict of Interest: None  | Check |
DOI: 10.4103/jcls.jcls_87_20
Background: Unaffordable health-care costs are a critical factor in poor cancer care in low and middle-income countries. Net costs of treating childhood cancer in Nigeria are largely undocumented. This study sought to define the direct cost of pediatric cancer treatment in Lagos, Nigeria, to address this knowledge gap. Methods: This was a longitudinal study design targeting determination of cost of cancer-related care delivered to newly diagnosed childhood cancer patients at the Lagos University Teaching Hospital, Idi-Araba, Lagos, Nigeria, from January 2017 to January 2020. Study participants included children with histologically confirmed diagnoses. All direct costs associated with care from the time of diagnosis until either remission or death were documented based on a parental survey at each patient encounter. Results: Among 46 enrolled participants (median age of 6 years), leukemia was the most common diagnosis. The median duration from diagnosis to last assessment was 11 months, and the average cost directly related from diagnosis to remission or death was NGN 5,064,700 (USD 13,876). The highest cost of care was associated with rhabdomyosarcoma, with an average cost of ₦6,798,635 ($18,678). These costs were juxtaposed to the average monthly family earning of NGN 115,228 (USD 316). Conclusion: This study revealed the direct cost of managing childhood cancer in Lagos, Nigeria, which proved unaffordable for most caregivers. Policies are needed to improve the affordability of health-care delivery for childhood cancer, including a focus on the adequacy of health insurance coverage and public health-related policies governing financial support targeting health-care delivery in the context of childhood cancer to improve outcomes.
Keywords: Childhood cancer, direct costs, low-middle income countries
How to cite this article:
Joseph AO, Akinsete AM, Awofeso OM, Balogun OD, Oyeyinka KA, Onitilo AA. Direct cost of treating childhood cancer in Lagos, Nigeria: A tale of financial inaccessibility to care. J Clin Sci 2021;18:179-85 |
How to cite this URL:
Joseph AO, Akinsete AM, Awofeso OM, Balogun OD, Oyeyinka KA, Onitilo AA. Direct cost of treating childhood cancer in Lagos, Nigeria: A tale of financial inaccessibility to care. J Clin Sci [serial online] 2021 [cited 2023 Jun 9];18:179-85. Available from: https://www.jcsjournal.org/text.asp?2021/18/4/179/332073 |
| Introduction | |  |
In recent times, cancer is now considered a leading cause of morbidity and mortality in children, with a disproportionate disease burden exceeding 82% noted in low, low-middle income countries (LMICs), including Nigeria. Notably, Nigeria ranks first in the world for the global burden of disease for Burkitt's and non-Burkitt's lymphoma.[1]
In the past five decades, advances in the understanding of cancer biology, coupled with increasingly efficient and innovative treatment modalities, have led to significant improvements in cancer survival rates globally.[2] However, in LMICs, including Nigeria, survival rates for pediatric cancers continue to hover around 30%.[3] Arguably, one of the most significant barriers to improved survival of children diagnosed with cancer in Nigeria is the relatively high cost of cancer care, which is unaffordable for many families.[4]
Private expenditure is estimated to constitute over 70% of total health expenditure, most of which is paid out of pocket.[5] Even following the establishment and review of the National Health Insurance Scheme (NHIS) in 1999 and 2013, it is estimated that only 3% of the entire population is currently covered under the health insurance system.[6] Cancer treatment is uniformly excluded for the 3% who do have an insurance plan, private or otherwise. Currently, there is a death of information regarding the actual extent of coverage of childhood cancer care costs in Nigeria.[7]
Current advances in cancer management, especially with the advent of targeted therapies, immunotherapy, translational medicine, and advances in genomic testing and manipulations, have been associated with a commensurate increase in health-care spending.[8] Considering the prevalence of poverty, lack of insurance, and the persistent challenges to the pediatric oncology landscape in Nigeria, financial constraints would inevitably negatively impact survival statistics in Nigeria.[9]
Financial inaccessibility for cancer care in Nigeria is a well-established malady in adult patient populations.[10],[11],[12] Surgical, radiation, and targeted therapeutic interventions are expensive, and insurance systems are unable and/or ill equipped to shoulder cancer care costs; the consequences are treatment abandonment and poor outcomes. A more significant burden is projected in the context of cancers impacting pediatric and young adult populations since children have no sources of income, have acquired no property, and are not eligible for loans or financial support. They are 100% dependent on the finances of their parents/guardians, who often have other children, bills, and responsibilities tied to available financial resources. Only a few studies have examined the cost of treating a child with cancer in LMICs, with Stefan et al. in South Africa only reporting the direct costs of managing Hodgkin's lymphoma and other studies addressing the cost-effectiveness and not the direct cost of managing childhood cancer.[13],[14],[15] In addition, in Nigeria, no studies are outlining these costs. Thus, this study hopes to address this knowledge gap by outlining the estimated cost of diagnosis, treatment, and sources of funding for treatment in childhood cancer patients seen in Lagos, Nigeria. We hope that outlining these estimates will help inform health-care providers and policymakers about the burden of childhood cancer treatment in Nigeria and guide policies that can address this problem. In addition, having these estimates can help health-care professionals involved in pediatric oncology care counsel parents and caregivers of newly diagnosed patients on what to expect regarding the financial implications of care as they embark on the cancer journey.
| Methods | | |
The study was conducted at the Lagos University Teaching Hospital, Lagos State, Nigeria. Lagos State, located in the southwestern part of Nigeria, is regarded as the country's economic capital. The population is presently estimated to be over 21 million, representing 10% of the total population of Nigeria, juxtaposed against the state size, which accounts for 0.1% of the total land area of Nigeria.[16]
This study incorporated a longitudinal design examining health-care cost-associated data accrued from enrolled caregivers of children with a new diagnosis of cancer presenting from January 2017 until January 2020. Institutional Review Board approval was obtained from LUTH's Health, Research, and Ethics Committee (HREC NO: ADM/DCST/HREC/APP/3548). Informed consent was obtained from all caregivers, and assent was obtained from children aged 7 years and older. Structured questionnaires were used to get information from parents. The questionnaire contained four parts. Section 1 recorded sociodemographic and socioeconomic data. Section 2 recorded the history of the disease, diagnosis, and stage at diagnosis. Section 3 recorded treatment details and interventions. Section 4 recorded the dollar amount spent on diagnostic and staging investigations, treatment (including adjuvant), or other supportive therapies. The questionnaire was completed at the end of every admission. The actual cost of admission was documented. This process was continued until the completion of treatment or patient demise.
Only costs directly related to cancer care of the children recruited were recorded. Parallel costs, such as transportation to appointments or tests, accommodation costs for family/caregivers, complementary medicines, communication costs, and lost wages or income, were not included. With the aid of the predesigned tool curated from previous similar studies, study participants were stratified into groups according to diagnosis.[17] Each study participant noted all costs incurred related to the child's care, including costs of blood and blood products, hematological and radiological investigations, chemotherapy, radiotherapy, surgery, and rehabilitation. Children with cancer included in this review were classified into groups based on their primary cancer diagnosis into leukemia, lymphoma, rhabdomyosarcoma, Wilms tumor, retinoblastoma, osteosarcoma, Central Nervous System (CNS) tumors, neuroblastoma, and others. Within each group, the mean cost of services (blood and blood product transfusions, diagnostic investigations, ward admissions, drug and consumables, surgery, chemotherapy, and radiation therapy) was taken of every child within the group. This mean cost was then calculated and reported as the average cost of the service. All data collected were recorded and analyzed using the Statistical Package for the Social Sciences (SPSS) software (version 20.0, Armonk, NY, USA: IBM Corp.). Results were presented in frequency tables, graphs, and figures.
| Results | | |
A total of 49 new admissions seen during the study period were consented to and enrolled in the study; during this period, 63 new cancer cases were seen, however, 11 caregivers declined to participate. Data from three enrolled pediatric subjects were not included in the analysis because of incomplete entries or lost to follow-up. A total of 46 questionnaires completed by caregivers relating to the direct cost of care for children with a histologically confirmed cancer were reviewed. More males were 29 (63.0%) than female 17 (37.0%) children diagnosed with cancer among the study cohort. The median age of the children reviewed was 6 years, with ages ranging from 2 months to 17 years.
Leukemia was the most predominant type of cancer diagnosed among the pediatric cohort. Other less common diagnoses included osteosarcoma, neuroendocrine tumor, germ cell tumor of the ovary, and myxoid liposarcoma [Figure 1]. The mean number of hospitalizations was 11.7 ± 6.5 times, and the mean duration was 45.0 ± 25.2 days. | Figure 1: Case distribution of study participants. *ALL = Acute lymphoblastic leukemia, JMML = Juvenile myelomonocytic leukemia, Others = Mixed germ cell tumor, myxoid liposarcoma, and hepatoblastoma, CNS tumors = Medulloblastoma, glioma, intracranial germ cell tumor, primitive neuroectodermal tumor, and astrocytoma
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Thirty-eight of 92 caregivers (18 mothers and 20 fathers) (41.3%) had a secondary level of education, with a median family monthly revenue of NGN 69,000 (IQR: NGN 35,000–100,000).
In addition, 43 out of the 46 families (93.5%) reported that they needed assistance in payment of medical bills provided by friends, family members, nongovernmental organizations, and other forms of charity (religious organizations). Five of all caregivers (10.9%) reported a loss of employment as a consequence of the child's diagnosis. More than three-quarters, i.e., 36 (78.2%), of the caregivers reported selling property and personal belongings to provide care for the child [Table 1]. None of the caregivers had health insurance for the management of cancer.
In general, the average cost related directly to cancer care from diagnosis to remission or death was ₦5,064,700 ($13,876), in juxtaposition to the average monthly family income of ₦115,228 ($316). The most significant expense was incurred by children diagnosed with rhabdomyosarcoma, with an average cost of ₦6,762,555 ($18,528) [Figure 2] and [Table 2].
A significant disparity was noted between health expenditure on the child's cancer care and total monthly family revenue in each child recruited for this study. On average in all participants, the total monthly income projected at only about 1.7% of costs spent on cancer care [Figure 3].
| Discussion | | |
The average cost of care for pediatric cancer in Nigeria recorded in this study was ₦5,064,700. Predictably, a significant difference was noted in incurred cost depending on the diagnosis and any posttherapeutic complications. For example, the average cost of care in children with leukemia was ₦5,274,150/$14,450. The most substantial costs were incurred for chemotherapy and hospital admissions. The mean number of hospitalizations was 12.51 ± 6.36 times. The mean duration of hospitalizations for children with cancer was 48 ± 25 days, during which hospital fees accumulate to large amounts.
While cancer care in any part of the world is associated with high cost, in resource-constrained countries like Nigeria, the disparities in the economic earning power of the society make cancer care unavailable to the socially vulnerable members of the society. In a nation where the newly implemented minimum monthly wage is ₦33,000, the equivalent of $90 (compared to ₦18,000/$49 at study commencement), it is clear that specialized cancer care is unaffordable and, therefore, unavailable/inaccessible to the majority of the population. A stark but not surprising finding of this study was that the median income of the families in this study was ₦69,000, and more than three-quarters (82.6%) of them lived on less than or equal to ₦100,000 monthly. More than half (58.7%) of the caregivers had an average family size of four or more. A 2017 systematic review and meta-analysis by Mansell et al. on treatment abandonment on children with cancer in sub-Saharan Africa reported that finances and lack of insurance, respectively, were the top two causes.[18] Even without the burden of cancer management for a child, the presence of a chronic benign medical condition would be catastrophic to family finances, further driving the family into poverty. In such cases, the financial toll of cancer treatment would not only impact the child with the condition but also could contribute to the other children in the family needing to drop out of school, become homeless, or even starve. These findings are comparable to other studies in which parents and caregivers of children with cancer had to obtain loans, organize fundraisers, and mortgage or sell their homes and properties to afford the cost of care and provide for the family following the cancer diagnosis.[19],[20],[21] Caregivers' loss of employment (reported in 10.9%) and loss of property (reported in 78.2%) was observed as a side impact of this significant financial toll. Notably, none of the impacted families in this study had health insurance. The high cost of childhood cancer treatment and the poor access to health insurance impacts childhood cancer care in Nigeria as more families are likely to opt-out of getting treatment for children with cancer due to lack of funds, which would worsen disease outcomes and overall survival rates.
A recent systematic review concluded that the cost-effectiveness of childhood cancer treatment in LMICs provided evidence-based support for redoubling efforts to pursue new strategies for national childhood cancer intervention in LMICs.[14] If pediatric cancer survival rates are to improve at all in the coming decade, national efforts must be directed toward improving access to life-saving treatment. This could be accomplished by bringing down the cost of treatment through government-sponsored subsidies, more comprehensive insurance coverage, policy changes, and any other means available to the society.
The role of charity in the management of childhood cancer reported in historical studies was corroborated in this study, with confirmation of widespread utilization of financial assistance from nongovernmental organizations, religious bodies, hospital-based social aid, and contributions from friends and family.[22] These sources of revenue are often unsustainable in the context of chronic diseases, including cancer, which may potentially take years to treat.
In a 2012 study in Salt Lake City, Utah, the highest cost of $37,924 was incurred for children admitted for leukemia treatment.[23] Although the average costs noted in this study appear much lower than those reported from other parts of the world to the caregivers and parents in this study, these costs were still largely unaffordable in juxtaposition to available family resources.[24],[25]
It is unclear what effect the following factors had on final cost estimates: use of branded versus generic medication, unavailability of ampoules tailored to pediatric dosing, laboratory and radiological investigations performed in private versus government-owned institutions, and the use and purchase of blood products locally available versus externally procured blood and blood products. However, it can be surmised that when branded medications instead of their generic counterparts are used, the cost is higher. Further, transfusions of blood products obtained within the teaching hospital cost less than those procured from private institutions. These factors were not further examined in this study.
Study limitations
Although this study attempted to highlight the actual monetary implications of treating a child with cancer in Lagos, Nigeria, the scope of this study did not cover the other hidden costs in the management of these children. These hidden costs might include the financial impact of lost opportunities for parents and caregivers during treatment, and loss of credits, among others. Other indirect costs, such as transportation costs to hospital appointments, loss of income or wages, food nutrition costs, and supplemental costs, were also not evaluated.
If these costs are considered and included, they have the potential to highlight further the debilitating impact of childhood cancer care and treatment on parents and caregivers who pay out of pocket. We did not estimate the hidden cost implications of missed treatments (for example, missed chemotherapy session appointments or missed radiotherapy sessions due to lack of money), the inability to perform blood investigations, or the high costs of pediatric radiation therapy. Due to the relative, or in some cases total unavailability, of specialized treatment such as particle irradiation, targeted therapies, and bone marrow transplants, among others, these costs did not factor into estimates presented. Another limitation is the volatility of the Nigerian currency in recent years, which might make it difficult to use consistent conversion unit over the study period.
| Conclusion | | |
Children with cancer living in low- and middle-income countries like Nigeria are burdened by the catastrophic impact on their finances. The average cost of care for pediatric cancer in the country is largely unaffordable for majority of caregivers. Although economic variations and hidden costs must be taken into consideration, the reported costs from this study could provide a guide to parents and caregivers and serve as a resource to medical professionals as they counsel parents and caregivers of newly diagnosed cancer patients. These estimates may be useful to nongovernmental organizations and other financial aid institutions as they plan sustainable means of assisting caregivers of children with cancer. Policymakers may find this study valuable in the quest to improve access to care for pediatric cancer patients in Nigeria, especially in looking at provision of additional or alternative health insurance structures to support delivery of care to this vulnerable population.
Acknowledgments
The authors thank Dr. Ingrid Glurich for writing assistance and Marie Fleisner for editorial assistance in the preparation of this manuscript.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2], [Figure 3]
[Table 1], [Table 2]
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