Journal of Cancer Policy 7 (2016) 28–31
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Financial barriers to oral cancer treatment in India Patrick Edwards a,∗ , Sujha Subramanian a , Sonja Hoover a , Chaluvarayaswamy Ramesh b , Kunnambath Ramadas c a b c
RTI International, 3040 E Cornwallis Road, Research Triangle Park, NC 27709, USA Kidwai Memorial Institute of Oncology, Dr. M.H. Marigowda Road, Bangalore 560029, India Regional Cancer Center, Medical College Campus, Thiruvananthapuram, Kerala 695011, India
a r t i c l e
i n f o
Article history: Received 23 October 2015 Accepted 30 December 2015 Available online 6 January 2016
a b s t r a c t The objective of this study was to determine the major financial barriers that affect people’s access to oral cancer treatment in India. Barriers researched included not only the direct medical costs, but also the direct non-medical costs, such as transportation and lodging, and the indirect cost of missing work or family duties. Four hundred patients from two regions in southern India responded to a 2014 survey that asked about access and barriers to care. Traditionally, policies to increase screening, diagnosis and treatment of oral cancer have focused on affordable or free medical services for low-income groups; however, the hidden costs associated with receiving care are a significant burden. Transportation, lodging, loss of wages, and time away from family duties are key barriers to oral cancer care that policy makers should address. © 2016 Elsevier Ltd. All rights reserved.
1. Introduction The World Health Organization estimates that over 300,000 new cases of oral cancer are discovered globally each year [1]. About two-thirds occur in developing countries, with India comprising one-fifth of all new cases and one-fourth of deaths caused by oral cancer [2]. Oral cancer is cancer of the oral cavity, which includes mouth, lip, tongue, gum, floor of the mouth, and palate. Common causes of oral cancer include tobacco smoking and chewing, alcohol, HPV infection, and a lack of healthy diet [3]. Most cases of oral cancer in India go undetected in the early stages, which presents a major problem for the treatment of the cancer [4]. Results from a cluster randomized controlled trial in India showed oral cancer screening to be cost effective, with early detection by visual inspection as the critical step by cancer clinics to reduce oral cancer morbidity and mortality [5]. Several studies conducted in India have sought to discover reasons for delay in oral cancer patients receiving care. One study found that most delays in oral cancer care were caused by the patients themselves, despite having observed abnormal lesions in their mouths [6]. Another found that individuals with a low socio-
∗ Corresponding author. E-mail addresses:
[email protected] (P. Edwards),
[email protected] (S. Subramanian),
[email protected] (S. Hoover), Ramesh
[email protected] (C. Ramesh),
[email protected] (K. Ramadas). http://dx.doi.org/10.1016/j.jcpo.2015.12.007 2213-5383/© 2016 Elsevier Ltd. All rights reserved.
economic status delay treatment most often [7]. No research has addressed the specific financial barriers that people face to complete the treatment recommended to them. The purpose of this paper is to systematically assess the economic barriers that individuals in India face when receiving oral cancer treatment at Regional Cancer Centers. The paper suggests policy interventions, based on the survey results, to reduce the financial barriers to ensure optimal treatment of oral cancers in India. 2. Methods The financial barriers to oral cancer treatment were compiled from a patient survey administered in 2014 by two Regional Cancer Centers in southern India: Kidwai Memorial Institute of Oncology, Bangalore, India (Kidwai), and the Regional Cancer Center, Trivandrum, India (RCC). The survey was divided into topics including: patient demographics and behaviors; knowledge and attitude regarding oral cancer risk factors and treatment; access to care; health seeking behavior; and treatment and survivorship. The survey framework was derived from a conceptual model to assess barriers to cancer care. In the conceptual model, decreased access to care for financial reasons negatively affected the treatment received and ultimately lead to undesired outcomes [8]. The survey instrument was pre-tested with oral cancer patients from each center, and the instrument was translated into the local languages of Malayalam, Tamil and Telugu to facilitate data
P. Edwards et al. / Journal of Cancer Policy 7 (2016) 28–31
No Educaon
Primary Educaon
29
Higher Educaon (Secondary/College) 92.9%
78.6% 74.3% 71.4%
77.1%
74.5%
67.9% 64.3% 60.7% 56.9%
59.0%
56.4% 47.3% 47.0%
50.0% 46.4%
46.4%
49.1%
42.9%
27.3% 25.6%
25.0% 20.8% 17.9%
Expense of transportaon to and from the cancer center*
Cost of staying near the cancer center to receive care*
Cost of the treatment*
The need to get back to employment/family dues*
Expense of transportaon to and from the cancer center*
Cost of the treatment*
Cost of staying near the cancer center to receive care*
Kidwai
The need to get back to employment/family dues*
RCC
*Chi Squared p value < .1 Fig. 1. Financial barriers to oral cancer treatment by education (% who agree).
4.500 4.000 3.500
3.830
3.000 2.500 2.000
2.105
1.500 1.000 0.563
0.573
0.500 0.000 Expense of transportaon The cost of staying near the The cost of the treatment* The need to get back to to and from the cancer employment/family dues cancer center to receive center* care* Fig. 2. Odds ratios of the barriers to completing oral cancer treatment—RCC compared to Kidwai.
collection. Following the pre-test, the cancer centers held in-person interviews with patients who were recently diagnosed with oral cancer. Patients were recruited on a continuous basis and those who met the inclusion criteria (diagnosed with oral cancer, older than 18 years of age and undergoing treatment at the regional center) were enrolled in the study. Each cancer center administered the survey under the same standardized protocol to 200 participants, for a total sample of 400. We created an analytic file from the survey data for comparative analysis across both cancer centers. We stratified financial barriers by education level and used education level as a proxy for income or wealth to assess differences in financial barriers by socioeconomic status [9]. We hypothesized that financial barriers would have an inverse relationship to the level of education. We reported statistical significance using the chi-square statistic and performed logistic regressions to show significant differences in barriers between RCC
and Kidwai after controlling for key demographic variables, including gender, age, and education. 3. Results Table 1 shows the demographic and access to care results of the respondents. The majority of the participants are over 40 years of age, and over half are head of household. Over half of RCC respondents have at least a secondary education, while almost three-fourths of Kidwai respondents have no education at all. Almost all RCC respondents visit a health provider to receive care, while almost one-fourth of Kidwai respondents do not. Patients who attended Kidwai report substantially longer travel time than RCC patients: 18.5% compared to 3.5% report travel times of one hour or more. Additionally, the results show that majority of Kidwai respondents use public transportation and almost all spend
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P. Edwards et al. / Journal of Cancer Policy 7 (2016) 28–31
Table 1 Demographics and access to care among oral cancer patients.
Sample size (n) Female (%)*
RCC
Kidwai
Total
200
200
400
40.5
65.5
53.0
Age (%) <40 40–59 60+
7.5 45.5 47.0
12.5 59.5 28.0
10.0 52.5 37.5
Education (%)* None Primary Higher (secondary/college)
14.0 27.5 58.5
72.0 14.0 14.0
43.0 20.7 36.3
Relationship to head of household (%)* Head of the household Spouse Other
59.0 19.5 21.5
55.0 39.0 6.0
57.0 29.3 13.7
Marital status (%)* Married Widowed Other
77.5 18.0 4.5
95.5 1.0 3.5
86.5 9.5 4.0
Do you have a health provider you visit to receive care? (%)*
98.5
78.0
88.3
Type of provider (%)* Medical doctor/dentist (qualified practitioner with medical training) Ayurveda/homeopathy provider Other
94.9 2.0 3.0
100.0 0.0 0.0
97.2 1.1 1.7
How long would it take to get to the nearest health clinic or primary health center? (%)* <30 min 30 min–1 h 1–2 h >3 h
84.9 11.6 2.5 1.0
74.0 7.5 18.0 0.5
79.4 9.5 10.3 0.8
Travel by (%)* Public transportation Walk Other (car, bike, scooter)
54.1 21.7 24.2
88.5 11.0 0.5
71.3 16.3 12.4
How much would the trip cost (%)* <50 rupees 50–100 rupees >100 rupees
89.4 9.1 1.5
3.5 3.5 93.0
46.4 6.3 47.3
*
RCC = Regional Cancer Center of Trivandrum, Kidwai = Kidwai Memorial Institute of Oncology, Bangalore. * Chi squared p value <0.05.
over 100 rupees on travel. Among RCC respondents, about half use public transportation and the other half walk, drive, or use other means. Most RCC respondents spend less than 50 rupees on travel to seek care. There are statistically significant differences between Kidwai and RCC as shown in Table 1. Fig. 1 shows the financial barriers to oral cancer by education level and cancer center. About half of Kidwai respondents view the expense of transportation to and from the cancer center as a barrier to treatment, while 93% of RCC respondents with low education cited it as a major concern. The cost of staying near the cancer center to receive care is a significant barrier for approximately threefourths of Kidwai respondents regardless of education level. For RCC patients with no education, this barrier is reported by about 64%; however, it is less of a problem for RCC patients with greater education. The majority of respondents in both Kidwai and RCC do not cite the cost of treatment as a barrier. Less than one-fourth of Kidwai respondents view this as a financial issue. However, lower educated individuals in RCC are more likely to view treatment cost as a barrier. There is a larger burden on lower educated individuals from Kidwai regarding the need to return to family or employment. More than three-quarters of low educated individuals in Kidwai, and half of all RCC respondents cite employment or family duties as a barrier to oral cancer treatment.
Fig. 2 contains odds ratios with the magnitude each barrier has on respondents from RCC compared to respondents from Kidwai. The expense of transportation is nearly four times higher for patients from RCC compared to Kidwai; however, the cost of staying near the cancer center to receive care is only half as much a barrier for patients from RCC. In addition, the cost of treatment is twice as much of a barrier for patients from RCC compared to Kidwai.
4. Discussion Financial barriers affect a large portion of oral cancer patients who seek care from Regional Cancer Centers in southern India. This research shows that the costs of transportation, staying near a cancer center to receive care, and treatment’s opportunity cost of being unable to work are substantial. Efforts by the government sector to improve oral health outcomes have largely been targeted toward the cost of treatment. The Regional Cancer Centers that administered the survey both offer affordable care to over 1000 oral cancer patients per year, with lower income patients often receiving free care. According to Kidwai, a patient can buy oral cancer drugs from their center for 40–60% cheaper than private cancer care centers [10]. This research shows that these efforts have generally been successful. Although cost of treatment still remains a barrier for those seeking care at
P. Edwards et al. / Journal of Cancer Policy 7 (2016) 28–31
these centers, concerns about other financial costs related to seeking care are now more important. A key finding from this study is that there is a significant gap between those with no education and those with primary or higher education in terms of the extent of the burden. RCC participants with no education report higher burden related to transportation expense, treatment cost and the cost of staying near the cancer center to receive care. Those with no education in Kidwai also report higher burden of transportation costs and the need to get back to work. Therefore, targeted policies are needed to decrease financial burden for those with overall low socioeconomic status. Regional Cancer Centers and the state often provide free or subsidized transportation for treatment, but these policies may have to be revisited to ensure that adequate compensation is provided and that all those in need are aware of the financial assistance available. One limitation of this study is that these results are based on a survey of patients who received care at Regional Cancer Centers. Therefore, these results are not generalizable to all cancer patients seeking care, especially those receiving care at private cancer hospitals who do not receive subsidized treatment. Future studies should include a broader and more varied group of cancer centers. In addition, we did identify variation between the two cancer centers included in this study. These centers differ in the underlying demographics and socioeconomic status of the population seeking care; therefore caution should be applied when comparing results among the Regional Cancer Centers. To strengthen the analysis performed in this study, we did stratify by education level. Finally, the results presented are based on the experiences of oral cancer patients which may differ from patients diagnosed with other types of cancers. Traditionally, efforts to improve treatment completion at Regional Cancer Centers in India have focused on reducing the cost of treatment. This research finds that among those receiving care at these centers, treatment cost is now a lesser burden than the nonmedical costs associated with receiving oral cancer care. Reducing these non-medical barriers through further government policies is essential to improve treatment outcomes.
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Study approvals This study has received IRB approval from RTI International, Kidwai Memorial Institute of Oncology, and the Regional Cancer Center of Trivandrum. Acknowledgments We would like to thank the staff from Kidwai Memorial Institute of Oncology and the Regional Cancer Center of Trivandrum for their assistance with the survey data collection. References [1] J. Ferlay, I. Soerjomataram, M. Ervik, R. Dikshit, S. Eser, C. Mathers, M. Rebelo, D.M. Parkin, D. Forman, F. Bray, GLOBOCAN 2012 v1.0, Cancer Incidence and Mortality Worldwide: IARC CancerBase No. 11 [Internet]. Lyon, France: International Agency for Research on Cancer (2013) http://globocan.iarc.fr (accessed 22.03.15). [2] S. Subramanian, Barriers Related to Screening Diagnosis and Treatment of Oral Cancers in India. Powerpoint (2014). [3] Oral Cancer Facts Oral Cancer Foundation. Available from: http://www. oralcancerfoundation.org/facts/, (accessed 22.03.15). [4] P.S. Khandekar, P.S. Bagdey, R.R. Tiwari, Oral cancer and some epidemiological factors: a hospital based study, Indian J. Community Med. 31 (3) (2006) 157–159. [5] S. Subramanian, R. Sankaranarayanan, B. Bapat, et al., Cost-effectiveness of oral cancer screening: results from a cluster randomized controlled trial in India, Bull. World Health Organ. 87 (3) (2009) 200–206. [6] P. Joshi, S. Nair, P. Chaturvedi, D. Nair, J.P. Agarwal, A.K. D’Cruz, Delay in seeking specialized care for oral cancers: experience from a tertiary cancer center, Indian J. Cancer 51 (2014) 95–97. [7] A.K. Agarwal, Ashwani Sethi, Deepika Sareen, Shruti Dhingra, Treatment delay in oral and oropharyngeal cancer in our population: the role of socio-economic factors and health-seeking behaviour, Indian J. Otolaryngol. Head Neck Surg. 63 (2) (2011) 145–150. [8] S. Subramanian, S. Hoover, P. Edwards, Barriers Related to Screening, Diagnosis, and Treatment of Oral Cancers in India. RTI Working Paper (2014). [9] OECD, OECD Economic Surveys: India, OECD Publishing, 2014 http://dx.doi. org/10.1787/eco surveys-ind-2014-en. [10] Kidwai Memorial Institute of Oncology http://www.kidwai.kar.nic.in/ aboutus.htm.