|Ahead of print
Financial impact of oral cancer treatment on the households in rural India
Sourav Goswami1, Subodh Sharan Gupta2, Nitin Gangane3, Virendra Vyas4, Aroop Royburman5
1 Labcorp Scientific Services & Solutions Private Limited, Pune, Maharashtra, India
2 Department of Community Medicine, MGIMS, Sevagram, Wardha, Maharashtra, India
3 Department of Pathology, Mahatma Gandhi Institute of Medical Sciences, Sevagram, Wardha, Maharashtra, India
4 Department of Radiotherapy, MGIMS, Sevagram, Wardha, Maharashtra, India
5 Regional Cancer Center, Agartala Government Medical College, Agartala, Tripura, India
|Date of Submission||13-Mar-2019|
|Date of Decision||13-Mar-2019|
|Date of Acceptance||08-Feb-2021|
|Date of Web Publication||29-Jun-2022|
Subodh Sharan Gupta,
Department of Community Medicine, MGIMS, Sevagram, Wardha, Maharashtra
Source of Support: None, Conflict of Interest: None
Background: Oral cancer ranks second and accounts for over 20% of all cancers reported in India. Like management of all other cancers, oral cancers bring a heavy financial burden to their families. This study analyzes the financial burden on families during the management of oral cancer at Kasturba Hospital, Sewagram, a government-aided tertiary health care facility in central India.
Methods: The hospital-based cross-sectional study was conducted in the cancer unit of a government-aided tertiary hospital of central India. A total of 100 patients with oral cancer being treated in the hospital were included in the study. Information regarding cost incurred on management of oral cancer was inquired from a close family member or a caregiver of the study subjects.
Results: The out-of-pocket expenditure on treatment of oral cancer was approximately INR 100,000 (USD 1363). It has been found that 96% of families experienced catastrophic health expenditure as a result of treatment.
Conclusion: Although India aims for universal health coverage, it is important to protect cancer patients from catastrophic health expenditure.
Keywords: Catastrophic expenditure, financial impact, oral cancer, out-of-pocket expenditure, rural India
In India, oral cancer results in catastrophic health expenditure not only for families in lower socioeconomic status, but for families belonging to all socioeconomic status. Therefore, an approach for protection from catastrophic health expenditure must also have provisions for non-poor families against cancer and other similar diseases.
| » Introduction|| |
Oral cancer, which is found to occur in the lip, floor of mouth, oral mucosa, gingiva, alveolus, gingivo-buccal sulcus, palate, or tongue, collectively contributes to substantial morbidity and mortality worldwide, with an estimated 526,481 annual incident cases., Age-adjusted rate of oral cancer in India is 20 per 100,000 population and accounts for 30% of all cancers in the country., As per the Global Burden of Cancer Study 2013, oral cancer ranks second for incident cancer cases among both sexes in India after breast cancer and ranks eighth for deaths occurring as a result of the disease in both sexes.,
The incidence of oral cancer is disproportionately higher among men and families belonging to the lower socioeconomic strata.,, Poor access to health services and lack of financial protection in treatment these patients result in delay in these patients presenting to appropriate health care facilities for management. The budget allocation for cancer-related spending in India increased from INR 115 million (USD 1.57 million) in the sixth plan (1980–1985) to INR 28,719 million (USD 391 million) and INR 60,000 million (USD 817 million) in eleventh and twelfth 5-year plan, respectively.
The financial burden of the cost of treatment for cancer is high in India, where majority of healthcare is provided by private healthcare providers either in absence or negligible insurance cover or social security. However, there are very few published data from India on the cost of providing cancer care.,
Out-of-pocket (OOP) payment, which accounts for more than three-quarters of cancer expenditure in India, is one of the greatest threats to households and is responsible for catastrophic expenditure that negatively affects not only the patient but also their whole family. It has been calculated that the mean OOP on inpatient care in private hospitals is about three times that of public setups. Moreover, treatment for about 40% of cancer hospitalization is financed mainly by borrowings, sale of assets, and financial help from family and friends. More than 60% of households who seek care from private facilities incur OOP over 20% of their annual per capita household expenditure. There is a paucity of published literature on OOP incurred mainly by oral cancer patients and specifically for the expenses which were not related to oral cancer treatment. This study was planned to analyze the financial burden on oral cancer patients and gaps in financial protection for cancer.
| » Material and Methods|| |
The cross-sectional study was conducted at Kasturba Hospital, Sewagram, a rural medical college in central India from September 2015 to August 2017. The study population included patients diagnosed with squamous cell cancer of lip, tongue, buccal mucosa, alveolus, or gingiva-buccal mucosa, who came to radiotherapy unit (RTU) of medical college for follow-up after 2 to 3 months of treatment completion. Information regarding OOP expenditure incurred on management of the patients was collected from family members or caregivers who were aware of the treatment expenses since the time of diagnosis of the disease.
Kasturba Hospital provides healthcare to approximately 400–450 patients with head and neck cancer every year, out of which about two-thirds (between 250 and 300) have oral cancer. Assuming the expected population standard deviation to be 1 and using t-distribution to estimate sample size, the sample size for estimating mean with 95% confidence and 0.2 precision was calculated to be 100 participants. A convenient sampling approach was used till the desired sample size was achieved. Sampling was done with replacement for nonresponse. Both men and women were enrolled in the study. We did not put any age barrier for selecting study participants.
As per mutual convenience, a date for an interview was scheduled, which coincided with their planned first follow-up visit to RTU. We have requested the caregiver/family member, who was mostly involved in arranging money for the different expenses incurred during treatment to accompany the patient. We believed, he/she could tell us the best estimate of most of the expenses incurred by the family so far, for cancer treatment. They were also requested to bring all the documents, bills, cash receipts, etc., whatsoever was available in the house with reference to treatment costs, in order to help them recall the expenses incurred. Considering recall period has an important role in our study, we tried to arrange the meetings during their first follow-up visit to the hospital after treatment completion.
Informed written consent was obtained from all study participants. The caregivers were explained about the objective of this study. They were also informed that the study was being conducted solely for academic interests and they would not receive any financial benefit out of it. Interviews were taken in private, in absence of the patient, where they could speak openly and talk about different expenses the family has borne throughout the tenure of treatment. Later, the findings were shared with the patient and any additional input was included.
A questionnaire was framed to record the financial impact of oral cancer on households. Using this tool, the direct and indirect costs of treatment were assessed that helped in calculating catastrophic expenditure. Direct costs were again divided as direct medical cost and direct non-medical cost. Direct medical cost includes the cost of hospitalization, diagnosis and cost of medicines and appliances used. The direct non-medical cost included the cost of transportation, traveling, accommodation, and food for the patient as well as family members who accompanied him/her. The indirect cost of cancer is the value of lost days of work and lower wages incurred by patients due to illness and the caregivers as a result of accompanying the patient in hospital or at home. In addition, this tool also recorded the measures for arranging money for continuing treatment. Long-term impact on economy of family was also assessed like change of job or impact of selling some family property to arrange money for treatment. This questionnaire was pilot tested with 10 study participants in the same study settings. The data of the pilot testing were not included in the analysis.
The data were entered in EPI INFO version 7 and analysis was done using R., The study was initiated after obtaining approval from the institutional ethics committee.
| » Results|| |
The characteristics of 100 oral cancer patients included in our study are summarized in [Table 1]. The mean age of the study population was 48.7 (range 30-72) years, 81% of them were men. Eighty three percent of the patients stayed with their spouse and 48% patients stayed in nuclear families. We have recorded the years of schooling of the study participants and it was found that 19% of them never went to school, whereas 15% of them studied till class six. Majority of them studied for 7 to 12 years and 6% of them ever went to college.
On the basis of monthly per capita income, study population was divided into five income groups as per modified B.G. Prasad classification (2016). We found 13%, 21%, 33%, 32% and 1% of the population were from upper [per capita monthly income >6253 INR (USD 85)], upper-middle [per capita monthly income 3127–6253 INR (USD 42.6–85.0)], middle [per capita monthly income 1876–3126 INR (USD 25.5–42.5)], lower-middle [per capita monthly income 938–1875 INR (USD 12.8–25.5)] and lower class [per capita monthly income <938 INR (USD 12.8)], respectively.
We estimated the cost incurred to the family as a result of cancer treatment. The information on expenditure on oral cancer management was collected from caregivers. The expenses incurred were divided into direct, indirect, and hidden cost of treatment. [Table 2] shows the financial history of oral cancer patients. The mean direct medical cost of treatment of oral cancer was INR 80,273.00 (USD 1094) and mean direct non-medical cost of treatment was INR 27,537.00 (USD 375). Mean indirect cost incurred for management of the disease was INR 13,320.00 (USD 18). A majority of the study participants (86%) benefited from some social security schemes, most prominent among them was Mahatma Jyotiba Phule Jan Arogya Yojana which was previously called Rajiv Gandhi Jeevandayee Arogya Yojana (RGJAY). This was a universal health care scheme run by the Government of Maharashtra. It was the responsibility of the medical college to provide this facility to the patients. An average of INR 21,860 (USD 298) was reimbursed from insurance or social security schemes. The mean OOP expenses for cancer management were calculated to be INR 99,270.00 [approximately 100,000 INR (USD 1363)].
The source of money for treatment and care of the patient has been shown in [Figure 1]. Almost all families had to completely spend their savings. Majority of them (78%) borrowed money from friends and relatives, 37% borrowed from institutions, 29% borrowed from the money lenders and 33% of families had to sell their property or household possessions to meet the expenses for treatment.
[Figure 2] shows 32% of households incurred cut down of important expenses for bearing the costs of treatment. Apart from the treatment expenses for oral cancer, 31% of the families had to manage money for continuing treatment of other family members who were suffering from one or other chronic diseases such as hypertension, diabetes, asthma, etc. This resulted in more OOP expenditure for the family. It has been found that 12% of families managed money by stopping treatment for other family members, whereas 8% families deferred higher education of their family members.
We calculated catastrophic expenditure as per the following definition. Catastrophic expenditure is considered when OOP expenses on treatment of oral cancer exceeds 10% of the total yearly family income. We found that 96% of the families had undergone catastrophic OOP for the treatment of oral cancer, which has been depicted in [Figure 3].
|Figure 3: Percentage of families undergoing catastropic expenditure as a result of the treatment costs for oral cancer|
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We tried to see how the catastrophic expenses varied among different socioeconomic strata [Figure 4]. There is no group, which is immune to catastrophic expenses. Except for the upper socio economic status (SES) or Group 1, certain percentage of all SES groups incurred treatment expenses more than 100% of annual yearly income, which was shown by the red color. The bean plot [Figure 5] shows, families with lower socioeconomic status had risk of spending higher percentage of annual income as OOP for management of patients with oral cancer in their household. For some of the families in Grades 3, 4, and 5, OOP expenses were found to be more than twice their household annual income.
|Figure 4: Distribution of OOP among different strata of Socio economic status|
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To neutralize the effect of outliers, we did a robust regression to see the relationship between different independent variables and “total expenditure as percent of yearly income”. We used sex, socioeconomic status, family type, stage of disease, site of oral cancer, insurance status and treatment given to the patient - as independent variables in the model in R. For the sake of ease, we have included SES IV and V together and named it SES IV. The final robust regression model is shown in [Table 3]. We found 'socioeconomic status' and 'insurance coverage' were included in the final model of robust regression and were found to be significantly protective against catastrophic expenditure toward treatment of oral cancer.
|Table 3: Results of robust regression for total expenditure as % of yearly income for treatment of oral cancer|
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| » Discussion|| |
The cost of treatment of oral cancer was enormous. Apart from the cost of medicines, diagnostics, and surgery, transportation and accommodation cost were also high. Apart from this, there were hidden expenditure of loss of wages of both patient and the caregiver. We found that financial instability has a tremendous impact on the family while trying to meet the expenses for treating oral cancer. Though a large proportion of the families benefited from some social security schemes, around 96% of households underwent catastrophic expenditure. This included families from better socioeconomic status as well. In the book 'Families caring for an aging America', economic impact of caregiving was vividly described. Their findings were similar to what we got in our study. They stated that co-residing with another older adult needing help might increase the financial burden on family. We found more than one-third of families had family member/s suffering from another chronic/long-term ailment apart from the one suffering from oral cancer; this further increased financial stress on the families. Discontinuation of the treatment of other family members was found to be an important means of saving money to continue cancer treatment.
Schulz R et al. stated that limited or no access to paid leave or a flexible workplace, if employed, increased the financial impact. As farming or working as daily laborer were the main occupations of caregivers included, there was no chance of any paid leave. If they did not go to work, the wage for that day was lost resulting in a hidden cost of approximately 14,000 INR (USD 191). Edwards P et al. observed an association between education and financial impact due to oral cancer treatment in India with a significant financial burden on families of illiterate patients. However, in our study, we did not find any significant correlation between education and financial impact of oral cancer.
Though we tried to be as thorough as possible in collecting information regarding the expenditure, yet many of the caregivers failed to recall the exact amount they spent. Many of them were also hesitant to talk about the financial matters, which means that the estimate for expenses were based on self-reports. We enquired about the expenses incurred after the diagnosis of oral cancer was confirmed histologically, but, most of the families had already spent a lot before they were actually diagnosed. Many of them also went for indigenous treatment or over-the-counter medicines, the expenses for which were beyond the scope of this study. The assessment of health expenditure in this study was done when the patients returned to the RTU of the hospital for follow-up after 2 to 3 months of completion of treatment. We understand that this could have led to an underassessment of the total health expenses incurred. We could have a more appropriate picture of the financial costs, if multiple interviews at different phases of treatment could have been arranged. These might be regarded as the limitations of our study.
Due to low population coverage of health insurance in India and a poorly run public sector, there has been a large burden of OOP spending on households affected by cancer. Households managed by borrowing or selling assets that resulted in increasing burden on the unaffected family members. As India's workers were mostly used in informal sector with limited social security benefits, the loss of wages as a result of absence from work, due to illness or caregiving was high.
The major policy implication of our findings was the need for protection against financial risks from cancer in Indian households. This was not surprising given the heavy reliance on OOP spending in financing healthcare in India: government financing accounts for only about one-fourth of India's aggregate health spending of 4.5% of GDP. Most of the residual spending is in the form of OOP spending by households.
Our results showed that households from all socioeconomic strata face a large economic risk from cancer. This was more serious for low SES households who relied on borrowing and asset sales to a much greater extent to finance their healthcare.
The disease and weakness caused as a sequel has its implication in reducing the income-generating capabilities. Though it's true for all socioeconomic strata, poor are affected the most, as they are mostly dependent on their physical strength to earn their livelihood. Non-medical costs including transportation, accommodation, and cost of childcare add on to this burden, more so for the lower SES.
All the nations including India are striving to achieve universal health coverage (UHC). UHC aims at improving access to a good-quality promotive, preventive, curative, rehabilitative, and palliative health services without getting exposed to financial hardship for all people and communities. Although providing access to cancer services and financial risk protection is challenging, several middle-income countries, for example, Malaysia and Thailand, have done very well in ensuring UHC for their citizens. The inter and intrastate variations as regards to economic development, state of health care services and utilization patterns pose further challenges in achieving UHC in India. Strengthening the financial protection for the patients suffering specifically from deadly diseases like cancer is the need of the hour.
The major component of the direct cost was formed by cost incurred on medications. Chemotherapy is a very important part of any cancer treatment and the cost of these medicines is very high. In government setting, only a few drugs are available for free and remaining cost of medication has to be borne by the families of the patient. Provision of chemotherapy drugs through the health system will help reduce catastrophic health expenses significantly. If this is not possible, bulk purchase by hospital which is charged to the patients, may help in bringing down the treatment cost.
In 2018, India launched Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (AB PM-JAY), a flagship scheme that aims to provide free health coverage at the primary, secondary and tertiary level to its bottom 40% poor and vulnerable population. Under this scheme, improvement in financial risk protection for cancer patients from lower SES is expected. The scheme will benefit those families who incur catastrophic expenses but do not qualify as poor and vulnerable families under this scheme. National health insurance benefits in South Korea, which aimed to reduce catastrophic expenditure among all cancer patients, resulted in a smaller reduction in catastrophic payments for the low-income than the high-income patients. Considering this example, financial protection that answers to the direct costs of cancer treatment may not be sufficient to prevent financial catastrophe. Job security for the informal sectors and alternate modes of payment––EMI (equated monthly installments), soft loans, etc., might help address the nonmedical costs of oral cancer treatment.
We found in our study, most of the patients were diagnosed in their advanced stages, which required complex treatment regimens that are costlier.,, Though it apparently appears that early detection of oral cancer will help in alleviating the treatment costs, but actually, it should go hand in hand with primary prevention, mostly by risk factor modification like decreasing the rate of use of tobacco in all its forms.,
Cancer patients and their caregivers go through tremendous psychological stress from the diagnosis till the end of life, OOP and the financial catastrophe caused as a result of the treatment adds onto it., Oral cancer and its treatment have a devastating financial impact on Indian households across all strata. This is irrespective of the presence of different government and non-governmental programs and schemes. The gaps in financial protection to these patients need to be identified and efficiently managed to support the families who are already devastated with diagnosis of oral cancer within their families.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms. In the form the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
Title: Psycho social and economic impact of Oral Cancer on patient and their caregiver: a community based mixed method study in central India
| » References|| |
Soerjomataram I, Lortet-Tieulent J, Parkin DM, Ferlay J, Mathers C, Forman D, et al
. Global burden of cancer in 2008: A systematic analysis of disability-adjusted life-years in 12 world regions. Lancet 2012;380:1840–50.
Ferlay J, Soerjomataram I, Dikshit R, Eser S, Mathers C, Rebelo M, et al
. Cancer incidence and mortality worldwide: Sources, methods and major patterns in GLOBOCAN 2012. Int J Cancer 2015;136:E359–86.
Fauci AS, Kasper DL, Longo DL, Braunwald E, Hauser SL, Jameson JL, et al
. Harrison's Internal Medicne. 17th
ed. New York: McGraw Medical; 2008. p. 546-92.
Fitzmaurice C, Dicker D, Pain A, Hamavid H, Moradi-Lakeh M, MacIntyre MF, et al
. The global burden of cancer 2013. JAMA Oncol 2015;1:505-27.
Gelband H, Jha P, Sankaranarayanan R, Horton S. Cancer. Cancer: Disease Control Priorities, Third Edition (Volume 3). The International Bank for Reconstruction and Development/The World Bank; 2015.
Indian Council of Medical Research. Consolidated Report of Hospital Based Cancer Registries-An Assessment of the Burden and Care of Cancer Patients: 2012-2014. Bangalore, India. 2013. Available from: https://ncdirindia.org/ncrp/Annual_Reports.aspx
. [Last accessed on 2018 Jan 16].
Patil P, Bathi R, Chaudhari S. Prevalence of oral mucosal lesions in dental patients with tobacco smoking, chewing, and mixed habits: A cross-sectional study in South India. J Family Community Med 2013;20:130-5.
Thakur JS, Paika R. Determinants of smokeless tobacco use in India. Indian J Med Res 2018;148:41–5.
] [Full text]
Khandekar SP, Bagdey PS, Tiwari RR. Oral cancer and some epidemiological factors: A hospital based study. Indian J Community Med 2006;31:157–9.
Berkman ND, DeWalt DA, Pignone MP, Sheridan SL, Lohr KN, Lux L, et al
. Literacy and Health Outcomes. Summary, Evidence Report/Technology Assessment No. 87 AHRQ Publication No. 04-E007-1. Rockville, MD: Agency for Healthcare Research and Quality. January 2004. Available from: https://www.ncbi.nlm.nih.gov/books/NBK11942/
. [Last accessed on 2020 Oct 06].
Chauhan AS, Prinja S, Ghoshal S, Verma R, Oinam AS. Cost of treatment for head and neck cancer in India. PLoS One 2018;13:e0191132.
Mahal A, Karan A, Fan VY, Engelgau M. The economic burden of cancers on Indian households. PLoS One 2013;8:e71853.
Dhand, NK, Khatkar, MS. Statulator: An online statistical calculator. Sample Size Calculator for Estimating a Single Mean. 2014. Available from: http://statulator.com/SampleSize/ss1M.htm
. [Last accessed on 2020 Oct 06].
Rajpal S, Kumar A, Joe W. Economic burden of cancer in India: Evidence from cross-sectional nationally representative household survey. PLoS One 2018;13:e0193320.
Team RC. The R Project for Statistical Computing. Vienna, Austria; 2013. p. 1–12. Available from: http://www.r-project.org/
. [Last accessed on 2020 Oct 05].
Khairnar MR, Wadgave U, Shimpi PV. Updated BG Prasad socio-economic classification for 2016. J Indian Assoc Public Health Dent 2016;14:469-70. [Full text]
Qosaj FA, Froeschl G, Berisha M, Bellaqa B, Holle R. Catastrophic expenditures and impoverishment due to out-of-pocket health payments in Kosovo. Cost Eff Resour Alloc 2018;16:26.
Edwards P, Subramanian S, Hoover S, Ramesh C, Ramadas K. Financial barriers to oral cancer treatment in India. J Cancer Policy 2016;7:28–31.
Bhoo-Pathy N et al
. Policy and priorities for national cancer control planning in low and middleincome countries: Lessons from the Association of Southeast Asian Nations (ASEAN) Costs in Oncology prospective cohort study. Eur J Cancer 2017;74:2637.
Tangcharoensathien V, Patcharanarumol W, Ir P, Aljunid SM, Mukti AG, Akkhavong K, et al
. Health-financing reforms in Southeast Asia: Challenges in achieving universal coverage. Lancet 2011;377:863–73.
Pramesh CS, Badwe RA, Borthakur BB, Chandra M, Raj EH, Kannan T, et al
. Delivery of affordable and equitable cancer care in India. Lancet Oncol 2014;15:e223-33.
National health authority. Ayushman Bharat Pradhan Mantri Jan Arogya Yojana. Available from: https://www.pmjay.gov.in/
. [Last accessed on 2020 Mar 01].
Kim S, Kwon S. Impact of the policy of expanding benefit coverage for cancer patients on catastrophic health expenditure across different income groups in South Korea. Soc Sci Med 2015;138:241-7.
Goswami S, Gupta SS. How patients of oral cancer cope up with impact of the disease? A qualitative study in central India. Indian J Palliat Care 2019;25:103-9.
] [Full text]
Goswami S, Gupta SS. Cancer has almost a similar psychosocial impact on family caregivers as those of the patients; but are we doing enough for them? Indian J Cancer 2018;55:419-20.
] [Full text]
Bray F, Jemal A, Torre LA, Forman D, Vineis P. Long-term realism and cost-effectiveness: Primary prevention in combatting cancer and associated inequalities worldwide. J Natl Cancer Inst 2015;107:djv273. doi: 10.1093/jnci/djv273.
Oppeltz RF, Jatoi I. Tobacco and the escalating global cancer burden. J Oncol 2011;2011:408104. doi: 10.1155/2011/408104.
[Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5]
[Table 1], [Table 2], [Table 3]