|Year : 2022 | Volume
| Issue : 2 | Page : 88-93
Out-of-pocket expenditure for the diagnosis of cervical, breast, and oral cavity cancer: A cross-sectional study from a tertiary care hospital in South India
Shahana Singh1, Mahalakshmy Thulasingam1, Bharathnag Nagappa2, Chitrita Singh3, Vishnu Rajan4, Gunaseelan Karunanithi4
1 Department of Preventive and Social Medicine, Jawaharlal Institute of Postgraduate Medical Education and Research, Puducherry, India
2 Department of Community Medicine, A. J. Institute of Medical Sciences and Research Centre, Mangalore, Karnataka, India
3 Centre for Study of Regional Development, Jawaharlal Nehru University, New Delhi, India
4 Department of Radiation Oncology, Jawaharlal Institute of Postgraduate Medical Education and Research, Puducherry, India
|Date of Submission||25-Jun-2022|
|Date of Decision||29-Oct-2022|
|Date of Acceptance||30-Oct-2022|
|Date of Web Publication||06-Dec-2022|
Dr. Mahalakshmy Thulasingam
Department of Preventive and Social Medicine, Jawaharlal Institute of Postgraduate Medical Education and Research, Puducherry
Source of Support: None, Conflict of Interest: None
Background: Cancer as a disease has widespread financial impact on patients. Most public funded government schemes provide insurance only after the diagnosis is made. Patients incur a substantial out-of-pocket expenditure even before the diagnosis. Objectives: The study was done with the objective of determining the total cost (direct out-of-pocket expenditure and indirect cost) incurred from the symptom onset to diagnosis among patients diagnosed with cancer of the uterine cervix, oral cavity, and breast. Materials and Methods: In this hospital-based study conducted in the Regional Cancer Center of a tertiary hospital in South India, 100 patients were interviewed using a predesigned, pretested questionnaire. For cost calculation, the reference period was duration between the first contact to the health facility for the symptoms suggestive of cancer, and the histopathological diagnosis. The total direct (out-of-pocket expenses) and indirect (income lost) costs were determined by interviewing the participants. The Mann-Whitney and Kruskal-Wallis test were used to compare the out-of-pocket expenses across age, gender, and tumor type categories. Results: The median (first quartile [Q1] and third quartile [Q3]) cost incurred while diagnosing the three cancers was Indian rupees (INRs) 3660 (1280, 12,660); the median (Q1, Q3) direct cost was INR 1710 (350, 10,930) and the median (Q1, Q3) indirect cost was INR 250 (0, 2000). Those who visited a private health facility for their symptoms incurred a significantly higher direct cost (P < 0.05). Further, those aged 15–44 years, above the poverty line, male, who had completed more than primary education, or were diagnosed with cervical cancer incurred higher costs, although this was not statistically significant. Conclusion: Patients of common cancers incur a high out-of-pocket expenditure even before initiation of treatment. Measures such as providing all diagnostic modalities under a single roof and adopting a standardized protocol for various investigation procedures may help in reducing the costs incurred by patients.
Keywords: Breast neoplasm, cancer diagnosis, cervix neoplasm, oral cavity neoplasm, out-of-pocket expenditure
|How to cite this article:|
Singh S, Thulasingam M, Nagappa B, Singh C, Rajan V, Karunanithi G. Out-of-pocket expenditure for the diagnosis of cervical, breast, and oral cavity cancer: A cross-sectional study from a tertiary care hospital in South India. Int J Adv Med Health Res 2022;9:88-93
|How to cite this URL:|
Singh S, Thulasingam M, Nagappa B, Singh C, Rajan V, Karunanithi G. Out-of-pocket expenditure for the diagnosis of cervical, breast, and oral cavity cancer: A cross-sectional study from a tertiary care hospital in South India. Int J Adv Med Health Res [serial online] 2022 [cited 2023 Jan 27];9:88-93. Available from: https://www.ijamhrjournal.org/text.asp?2022/9/2/88/362843
| Introduction|| |
Cancer is a major contributor to the rising incidence of noncommunicable diseases worldwide, with 23 million new cases and 10 million deaths registered in 2019. In India, every year, over 11 lakh new cases are registered, with oral cavity and lung cancer in men and cervical and breast cancer in women contributing to 50% of the total burden.
There is a widespread economic impact of cancers on the health system, patients, and family. The average total out-of-pocket expenditure for cancer care in India is estimated to be Indian rupees (INRs) 29,066 in the public sector and an even higher amount of INR 84,320 for those availing treatment in the private sector. Catastrophic health expenditure has been increasing over the last two decades, pushing families into poverty. Despite government efforts to improve public funding for health care, health insurances mainly cover the direct medical cost of treatment and do not reimburse the medical expenses incurred during the diagnosis; although about 40% of the total out-of-pocket expenditure for cancer treatment is incurred even before the start of definitive cancer treatment.
From the onset of symptoms to the point of diagnosis, there are both direct and indirect costs involved. Direct medical costs include those paid for laboratory investigations, physician services, and medications. There are also direct nonmedical costs incurred for transportation, accommodation, and food while seeking health care services. Indirect costs such as loss of wages, unemployment, land or property also have a tremendous financial impact on patients and their families, which are often uncompensated.
Financial loss for cancer treatment has been thoroughly studied; this has laid the foundation for government schemes and health insurances globally. However, the cost borne by patients before diagnosis has not been the focus of recent research or government policies.
Hence, this study aims at uncovering the costs which the patients of the three most common cancers in India (i.e.) cervical, oral cavity and breast; have to pay out-of-pocket prior to their diagnosis.
| Materials and Methods|| |
The study was a hospital-based, cross-sectional study conducted in the Regional Cancer Center (RCC) in a tertiary care setting in Puducherry in 2017. Around 320 patients are registered monthly in the hospital-based cancer registry maintained at the RCC. Cancers of the uterine cervix, oral cavity, and breast are the most common cancers registered here, with around 50, 45, and 35 patients every month, respectively. We included patients diagnosed with these three cancers within the last 2 weeks and who sought treatment at RCC to minimise recall bias. Patients who were too sick to be interviewed and whose curative treatment was initiated outside the institute were excluded as differentiating the cost of cancer diagnosis and treatment would be challenging in them.
Assuming the average (standard deviation [SD]) of the total cost incurred by the patient preinitiation of cancer treatment as INR 4575 (SD = 2288) and absolute precision of 10%, the sample size was calculated as 96. We included 100 participants in the study. Proportionate to the total numbers registered in the last 3 months, we planned to include 35, 33, and 32 participants diagnosed with cancer of the uterine cervix, oral cavity, and breast, respectively, using quota sampling. From June to August 2017, we included participants registered at the RCC's outpatient department (OPD) on a randomly selected day until the required sample size for each cancer category was attained.
The first author interviewed the participants using a predesigned, pretested questionnaire after obtaining written informed consent. The questionnaire was adapted from the tuberculosis (TB) Coalition for Technical Assistance tool of the Stop TB Partnership. Validity of the questionnaire was established by face and content validity checks for calculating out-of-pocket diagnostic expenditure for TB patients. The questionnaire was adapted for cancer patients in English, translated and back translated from the local language Tamil, and pretested among five subjects. Written informed consent was obtained from study participants before enrolling them in the study. The questionnaire included socio-demographic details, tumor characteristics, and out-of-pocket expenditure with the direct and indirect cost. The reference period for the cost calculation was the duration between the first visit to health facility with symptoms suggestive of malignancy and the date of diagnosis with histopathology.
The number of visits and details of visits to health facilities including the distance of facility from place of residence and number of days of admission, if any, prior to diagnosis, was obtained. The direct medical cost included consultation fees, investigations, medication, and hospitalization fees in each visit. The direct nonmedical cost included accommodation, travel and food costs for the patient, and their caregiver for each visit. Indirect costs include the loss of income from not being able to work or working less because of the sickness. They also include lost productivity, job loss, lost income, and lost savings. Indirect cost was calculated as loss of income for patient and their caregiver. Participants and attenders were asked about how much money they would lose daily if they had to come to the hospital for treatment; this amount was multiplied by the total number of days they spent in the hospital to compute the indirect costs. As many of the patients were daily wage workers, loss of wages for all days of absenteeism from work was taken as the indirect cost. The total cost incurred was calculated by adding the direct and indirect cost.
The study was approved by the Institute Ethics Committee (vide number JIP/IEC/2017/0078). Study subjects were newly diagnosed cancer patients, and patients requiring support were counselled by a social worker at the hospital. The study was conducted in the OPD while the patients were waiting for their appointment; we ensured that the wait time of patients was not increased because of the study.
Study data were entered in EpiData version 3.1 for entry and version 126.96.36.199 was used for analysis (EpiData Association, Denmark). The out-of-pocket expenditure (direct and indirect cost) was summarized as median and first quartile –third quartile range (Q1, Q3) rounded off to the nearest tens. The out-of-pocket expenditure incurred was compared across the categories of age, gender, and type of tumor using Kruskal–Wallis test. P < 0.05 was considered statistically significant.
| Results|| |
A total of 100 participants were enrolled, majority of whom were women (80%) in the economically productive age group of 15–60 years (82%) and below poverty line (64%). Socio-economic status was classified based on the Targeted Public Distribution System of the state of Tamil Nadu or Pondicherry (according to place of residence), obtained from the participants' ration card. At the time of data collection, ration cards were color coded as green/white for above poverty line, yellow for below poverty line and red for those availing Antyodaya Anna Yojana scheme and included under below poverty line. Sociodemographic and clinical characteristics are mentioned in [Table 1].
|Table 1: Sociodemographic and clinical characteristics of study participants with cancer of uterine cervix, oral cavity and breast (n=100)|
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A majority of patients were diagnosed at government health facilities (78%) and had to visit a median of two health care facilities (Q1, Q3 = 1, 2) before definitive diagnosis was made. 57% of the patients had contacted government facility out of which 30 visited JIPMER.
[Table 2] summarizes the out-of-pocket expenditure incurred before cancer diagnosis among the study participants. All subjects had incurred an out-of-pocket expenditure during the diagnosis of cancer. The median total out-of-pocket expenditure incurred by the subjects was INR 3660 (Q1, Q3 = 1280, 12,660). Around 47% of total cost was due to direct cost with a median of INR 1710 (Q1, Q3 = 350, 10,930). Most of the direct cost was nonmedical expenditure for travel and food. The median indirect cost was INR 250 (Q1, Q3 = 0, 2000) mainly due to loss of income of the patient [Table 2]. It was noted that 50% subjects had a change in their income during the diagnosis of cancer. Around 14% of the guardian's income was compromised. Of the total subjects, 38% borrowed money. The median amount of money borrowed was INR 50,000 (Q1, Q3 = 13,750, 62,500). Around 17% sold their belongings such as livestocks, land, farm produce, and household items. Median value of sold property was INR 20,000 (Q1, Q3 = 10,000, 100,000).
|Table 2: Out-of-pocket expenditure (direct and indirect costs) for diagnosis of cervical, oral cavity, and breast cancers|
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[Table 3] stratifies the out-of-pocket expenditure incurred during cancer diagnoses based on select socio-demographic characteristics. The total out-of-pocket expenditure (both direct and indirect costs) was high among the age group of 15–44 years and men. Subjects living below poverty line and educated up to primary school incurred a high indirect cost. However, the direct cost was higher for those above poverty line and those with better education status. Patients with uterine cancer spent more money prior to diagnosis. However, these associations (with age, gender, educational level, and economic status) were not statistically significant. Subjects who first visited the private health facility for their symptoms incurred a higher out-of-pocket expenditure, especially a statistically significant higher direct cost. On the contrary, patients whose first point of contact was a government health facility incurred more indirect costs [Table 3].
|Table 3: Out-of-pocket expenditure (direct and indirect costs) for diagnosis of cervical, oral cavity, and breast cancers stratified based on select demographic characteristics|
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| Discussion|| |
The World Health Organization has set the target of universal health coverage; more specifically, all individuals and communities should receive the health services they need without suffering financial hardship. The aim is to achieve this by 2030. However, globally, over 930 million people spend at least 10% of their house income on healthcare.
In India, out-of-pocket expenditure contributes to 54.8% of total health care spending and GDP for healthcare was only 2.1% in 2021–22. Things have improved with advent of Ayushman Bharat (Pradhan Mantri Jan Arogya Yojana) scheme, which provides medical insurance to the poorest 40% of the population with INR 5 lakhs per family per year. However, there are several gaps in coverage including outpatient care, nonmedical cost of transport, food and accommodation. Among all diseases, cancer has the highest out-of-pocket expenditure (INR 57,232), causing the highest catastrophic health expenditure and distressing financing according to National Sample Survey Organisation.
Out-of-pocket expenditure starts from the time of onset of symptoms. Our study showed that INR 3660 was the total out-of-pocket expenditure incurred for the three most common cancers, even before treatment was initiated. This was less than that observed in a similar study where the average pretreatment expenditure was INR 14,597. This could be due to the recent increase in the number and better utilization of public health facilities in Tamil Nadu, where most of our participants lived. This could also be because of differences in population studied; only the common cancers were included in the present study while the previous research included all cancers diagnosed at their center. The cost of diagnosis may be higher for some rare cancers due to diagnostic challenges warranting costlier investigations.
Half of the total costs incurred by our study participants were direct costs (INR 1710). Average direct costs borne by patients for 1 year of cancer treatment is INR 1551.2, as shown in another study done in the same setting. This implies that patients have a constant out-of-pocket expenditure just for diagnosis and treatment. Another study from the same setting found that the average out-of-pocket expenditure incurred for cancer treatment is INR 35,816. It is significantly higher than our study's pretreatment cost of INR 3660. This shows that as the disease and treatment progresses, patients incur a heavier financial burden in terms of income loss or unemployment.
It is important to understand treatment-seeking behavior of patients, which is a direct reflection of the healthcare system. In our study, 43% contacted a private health facility, similar to that observed in a multicentric study done in 2011 in India; this is despite cost of treatment in private sector being 3.7 times that of public sector for cancer in India. Even in our study those who visited a private health facility for their symptoms incurred significantly higher direct costs, mainly for consultation and investigations.
Comparison of out-of-pocket expenditure between the three cancers showed that patients diagnosed with uterine cancer incurred a higher cost with a median of INR 4500. A relatively lower cost was incurred by patients diagnosed with breast cancer, with a median expenditure of INR 2730. However, a study from New Delhi found that the median expenditure incurred before the initiation of treatment was INR 1300, which is lower than that found in our research.
Patients had to visit an average of two health facilities before final diagnosis, which increases the out-of-pocket expenditure. A study among patients with head-and-neck cancers done in Chandigarh showed that out-of-pocket expenditure of patients seeking care from other primary or secondary care providers was as high as INR 20,435. Another study from Delhi showed that patients spent a considerable amount of money before reaching a tertiary care hospital. It is imperative that steps be taken to reduce the number of hospital visits while the diagnosis is made.
The indirect cost is contributed by decreased income of patient or his/her caretaker. Cancer treatment is known to impact the household income of the subject through reduced income of the subject and also the caretaker., Our study showed that even for the process of cancer diagnosis, income was compromised for 50% of subjects and 14% of their caretakers. This may be attributed to frequent visits made by the subject for investigations and report collection. It was noted that at the tertiary care hospital for breast cancer, it took around 23 days for obtaining the histopathology report from the date of first visit. Multiple visits to the hospitals could be decreased by making changes in the system, so that all investigations are available under a single roof.
Of note, patients with less than primary education incurred high indirect costs. This could be because these subjects were working in unorganized sectors or as daily wages laborers and were less likely to get paid leave. Although there are schemes to meet the direct costs of patients with low income, the family incurs economic hardship due to income loss and direct nonmedical costs such as travel and accommodation. The direct costs incurred by patients could be decreased if the diagnostic facility is made available, at least, at first referral units of the public health system. Proper referral of the subjects will also decrease the out-of-pocket expenditure.
Overall, several steps need to be taken up to reduce financial burden on patients, including increasing insurance coverage, reimbursing non-medical cost, and eliminating informal fees. Indirect cost can be reduced by decentralization of diagnostic and treatment services and avoiding unnecessary hospitalisations. Community participation in the form of improving knowledge on availability of social schemes and engaging civil society or local Nongovernmental Organisations are essential. Financial hardship can be removed only by a consistent medical system throughout the country under a comprehensive public health system. Health is not a commodity to be sold for profit but a fundamental right of every human being.
We have generated evidence that patients with breast, cervical, and oral cancers incur significant out-of-pocket expenditure before a formal diagnosis. Literature is limited for this time period in their illness trajectory as available studies have focussed mainly on the costs incurred during treatment. Recall bias was minimised by including participants who were diagnosed within 2 weeks of the data collection period. However, our study had certain limitations. The sample size was not sufficient for stratified analysis to determine the difference in the out-of-pocket expenditure between the various socio-demographic and clinic characteristics. Information from the patient is solely based on recall and because of the difficulty in obtaining the correct income, we could not determine the proportion of families experiencing catastrophic expenditure. Hence, further studies are required to determine what proportion of cancer patients faces catastrophic expenditure even before treatment initiation.
| Conclusion|| |
Even before starting treatment, patients with common malignancies have substantial out-of-pocket costs. These financial hardships can be overcome by including all diagnostic modalities under one roof, covering the diagnostics cost in the insurance, appropriate referral, and improving the hospital system.
This research work received GJ STRAUS scholarship from the JIPMER.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3]