Catastrophic health expenditure and distress financing of breast cancer treatment in India: evidence from a longitudinal cohort study.

OBJECTIVE: To estimate the catastrophic health expenditure and distress financing of breast cancer treatment in India. METHODS: The unit data from a longitudinal survey that followed 500 breast cancer patients treated at Tata Memorial Centre (TMC), Mumbai from June 2019 to March 2022 were used. The catastrophic health expenditure (CHE) was estimated using households' capacity to pay and distress financing as selling assets or borrowing loans to meet cost of treatment. Bivariate and logistic regression models were used for analysis. FINDINGS: The CHE of breast cancer was estimated at 84.2% (95% CI: 80.8,87.9%) and distress financing at 72.4% (95% CI: 67.8,76.6%). Higher prevalence of CHE and distress financing was found among rural, poor, agriculture dependent households and among patients from outside of Maharashtra. About 75% of breast cancer patients had some form of reimbursement but it reduced the incidence of catastrophic health expenditure by only 14%. Nearly 80% of the patients utilised multiple financing sources to meet the cost of treatment. The significant predictors of distress financing were catastrophic health expenditure, type of patient, educational attainment, main income source, health insurance, and state of residence. CONCLUSION: In India, the CHE and distress financing of breast cancer treatment is very high. Most of the patients who had CHE were more likely to incur distress financing. Inclusion of direct non-medical cost such as accommodation, food and travel of patients and accompanying person in the ambit of reimbursement of breast cancer treatment can reduce the CHE. We suggest that city specific cancer care centre need to be strengthened under the aegis of PM-JAY to cater quality cancer care in their own states of residence. TRIAL REGISTRATION: CTRI/2019/07/020142 on 10/07/2019.

Socio-economic variations of breast cancer treatment and discontinuation: a study from a public tertiary cancer hospital in Mumbai, India.

BACKGROUND: The study examined the socio-economic variation of breast cancer treatment and treatment discontinuation due to deaths and financial crisis. METHODS: We used primary data of 500 patients with breast cancer sought treatment at India's one of the largest cancer hospital in Mumbai, between June 2019 and March 2022. This study is registered on the Clinical Trial Registry of India (CTRI/2019/07/020142). Kaplan-Meier method and Cox-hazard regression model were used to calculate the probability of treatment discontinuation. RESULTS: Of the 500 patients, three-fifths were under 50 years, with the median age being 46 years. More than half of the patients were from outside of the state and had travelled an average distance of 1,044 kms to get treatment. The majority of the patients were poor with an average household income of INR15,551. A total of 71 (14%) patients out of 500 had discontinued their treatment. About 5.2% of the patients died and 4.8% of them discontinued treatment due to financial crisis. Over one-fourth of all deaths were reported among stage IV patients (25%). Patients who did not have any health insurance, never attended school, cancer stage IV had a higher percentage of treatment discontinuation due to financial crisis. Hazard of discontinuation was lower for patients with secondary (HR:0.48; 95% CI: 0.27-0.84) and higher secondary education (HR: 0.42; 95% CI: 0.19-0.92), patients from rural area (HR: 0.79; 95% CI: 0.42-1.50), treated under general or non-chargeable category (HR: 0.60; 95% CI:0.22-1.60) while it was higher for the stage IV patients (HR: 3.61; 95% CI: 1.58-8.29). CONCLUSION: Integrating breast cancer screening in maternal and child health programme can reduce delay in diagnosis and premature mortality. Provisioning of free treatment for poor patients may reduce discontinuation of treatment.

Socio-economic and regional variation in breast and cervical cancer screening among Indian women of reproductive age: a study from National Family Health Survey, 2019-21.

BACKGROUND: In India, breast and cervical cancers account for two-fifths of all cancers and are predominantly prevalent among women in the reproductive age group. The Government of India recommended screening of breast and cervical cancer among women aged 30 years and over. This study examines the socio-economic and regional variations of breast and cervical screening among Indian women in the reproductive age. METHODS: A full sample of 707,119 women aged 15-49 and a sub-sample of 357,353 women aged 30-49 from National Family Health Survey-5 (2019-21) were used in the analysis. Self-reported ever screening for breast and cervical cancer for women aged 15-49 and women aged 30-49 were outcome variables. A set of socio-economic and risk factors associated with breast and cervical cancer screening were used as the predictors. Logistic regression was used to understand the significant correlates of cancer screening and, concentration index and concentration curve were used to assess the socio-economic inequality in breast and cervical cancer screening. RESULTS: The proportion of breast and cervical cancer screening among women aged 30-49 were 877 and 1965 per 100,000 women respectively. Cancer screening was lower among women who were poor, young, had lower educational attainment and resided in rural areas. The concentration index was 0.2 for ever screening of breast cancer and 0.15 for cervical cancer among women aged 30-49 years. The concertation curve for screening of both breast and cervical cancers was pro-rich. Women with higher educational attainment [OR:1.46, 95% CI: 1.31-1.62], aged 40-49 years [OR:1.35; 95% CI: 1.28-1.43], resided in the western [OR:1.62; 95% CI:1.4-1.87] or southern [OR:6.66; 95% CI:5.93-7.49] region had significantly higher odds of up taking either of the screening. The pattern of breast and cervical cancer screening among women aged 15-49 was similar to that of women 30-49. CONCLUSION: The overall proportion of cancer screening among women in 30-49 age group is low in India. Early screening and treatment can reduce the burden of these cancers. Creating awareness and providing knowledge on cancer could be a key strategy for reducing the burden of breast and cervical cancers among women in the reproductive age in India.

Decadal change in the association between the status of young mother's Body Mass Index and anaemia with child low birth weight in India.

BACKGROUND: The study aims to investigate the changes in the socio-economic and demographic status of young mothers of age 15-24 years and to examine the association between mothers' nutrition, i.e., Body Mass Index (BMI) and anaemia with child low birth weight for almost two decades during 1998-2016 in India. METHODS: National Family Health Survey (NFHS) round II and IV were used. The sample of this study included 3405 currently married young mothers from NFHS II and 44,742 from NFHS IV who gave birth at least one child in the last three years preceding the surveys. Logistic regression and Blinder-Oaxaca decomposition analysis have been used in this study to examine the corresponding association between the concerned variables. RESULTS: The analysis showed that the prevalence of low birth weight (LBW) babies has decreased from 26.1 to 22.8 for the 15 to 19 age group and from 20.4 to 18.7 for the 20 to 24 age group over time. Young mothers with low BMI or severe anaemia have shown higher odds of having LBW babies. For instance, the odds of having a LBW child was 1.44 (p-value = 0.000; 95% CI: 1.05, 1.65) for mothers with low BMI and 1.55 (p-value = 0.000; 95% CI: 1.27, 1.90) with severe anaemia. Over the decade, the association of LBW babies with mothers' nutrition has decreased. The odds of LBW with mothers with low BMI decreased from 1.63 (p-value = 0.004; 95% CI: 1.21, 2.21) to 1.41 (p-value = 0.000; 95% CI: 1.27, 1.55). Similarly, mothers with severe anaemia, the odds of LBW child decreased from 2.6 (p-value = 0.000; 95% CI: 1.75, 3.8) in 1998 to 1.3 (p-value = 0.024; 95% CI: 1.02, 1.65) in 2016. CONCLUSIONS: The maternal and child health improvement in India has been moderate over the decade. Still, a significant proportion of the women are suffering from poor health and young mothers are at more risk to deliver LBW babies. It is highly recommended to integrate maternal and child health programmes with the ongoing health policies to improve the situation while taking additional care of the young pregnant mother and their nutritional health.

Chronic diseases and productivity loss among middle-aged and elderly in India.

CONTEXT: Chronic diseases are growing in India and largely affecting the middle-aged and elderly population; many of them are in working age. Though a large number of studies estimated the out-of-pocket payment and financial catastrophe due to this condition, there are no nationally representative studies on productivity loss due to health problems. This paper examined the pattern and prevalence of productivity loss, due to chronic diseases among middle-aged and elderly in India. METHODS: We have used a total of 72,250 respondents from the first wave of Longitudinal Ageing Study in India (LASI), conducted in 2017-18. We have used two dependent variables, limiting paid work and ever stopped work due to ill health. We have estimated the age-sex adjusted prevalence of ever stopped working due to ill health and limiting paid work across MPCE quintile and socio- demographic characteristics. Propensity Score Matching (PSM) and logistic regression was used to examine the effect of chronic diseases on both these variables. FINDINGS: We estimated that among middle aged adults in 45-64 years, 3,213 individuals accounting to 6.9% (95%CI:6.46-7.24) had ever-stopped work and 6,300 individuals accounting to 22.7% (95% CI: 21.49-23.95) had limiting paid work in India. The proportion of ever-stopped and limiting work due to health problem increased significantly with age and the number of chronic diseases. Limiting paid work is higher among females (25.1%), and in urban areas (24%) whereas ever-stopped is lower among female (5.7%) (95% CI:5.16-6.25 ) and in urban areas (4.9%) (95% CI: 4.20-5.69). The study also found that stroke (21.1%) and neurological or psychiatric problems (18%) were significantly associated with both ever stopped work and limiting paid work. PSM model shows that, those with chronic diseases are 4% and 11% more likely to stop and limit their work respectively. Regression model reveals that more than one chronic conditions had a consistent and significant positive impact on stopping work for over a year (increasing productivity loss) across all three models. CONCLUSION: Individuals having any chronic disease has higher likelihood of ever stopped work and limiting paid work. Promoting awareness, screening and treatment at workplace is recommended to reduce adverse consequences of chronic disease in India.

Understanding equity of institutional delivery in public health centre by level of care in India: an assessment using benefit incidence analysis.

BACKGROUND: The National Health Mission (NHM), the largest ever publicly funded health programme worldwide, used over half of the national health budget in India and primarily aimed to improve maternal and child health in the country. Though large scale public health investment has improved the health care utilization and health outcomes across states and socio-economic groups in India, little is known on the equity concern of NHM. In this context, this paper examines the utilization pattern and net benefit of public subsidy for institutional delivery by the level of care in India. METHODS: Data from the most recent round of the National Family Health Survey (NFHS 4), conducted during 2015-16, was used in the study. A total of 148,645 last birth delivered in a health centre during the 5 years preceding the survey were used for the analyses. Out-of-pocket (OOP) payment on delivery care was taken as the dependent variable and was analysed by primary care and secondary level of care. Benefits Incidence Analysis (BIA), descriptive statistics, concentration index (CI), and concentration curve (CC) were used to do the analysis. RESULTS: Institutional delivery from the public health centres in India is pro-poor and has a strong economic gradient. However, about 28% mothers from richest wealth quintile did not pay for delivery in public health centres compared to 16% among the poorest wealth quintile. Benefit incidence analyses suggests a pro-poor distribution of institutional delivery both at primary and secondary level of care. In 2015-16, at the primary level, about 32.29% of subsidies were used by the poorest, 27.22% by poorer, 20.39% by middle, 13.36% by richer and 6.73% by the richest wealth quintile. The pattern at the secondary level was similar, though the magnitude was lower. The concentration index of institutional delivery in public health centres was - 0.161 [95% CI, - 0.158, - 0.165] compared to 0.296 [95% CI, 0.289, 0.303] from private health centres. CONCLUSION: Provision and use of public subsidy for institutional delivery in public health centres is pro-poor in India. Improving the quality of service in primary health centres is recommended to increase utilisation and reduce OOP payment for health care in India.

Malnutrition and anaemia among adult women in India.

The latest National Family Health Survey conducted in 2015-16 (NFHS-4) showed that malnutrition and anaemia still pose huge health challenges in India. Data on 651,642 adult non-pregnant women aged 15-49 years were taken from the survey to study the nutritional and anaemia statuses of adult women by Indian zone and state. The relationships of these two variables with the women's urban/rural place of residence, education level, religion and eating habits, and wealth index of the family, were assessed. Body Mass Index (BMI) and haemoglobin level were used to assess nutritional status and level of anaemia, respectively. The results show that in 2015-16 in India the percentages of underweight and obese/overweight people were 22.4% and 18.4%, respectively. The percentages of undernutrition and overnutrition were more or less same. The percentage of underweight people was higher in the middle belt region of India. Zones with high levels of overweight or obesity were concentrated in the West, North and South zones. A comparison of the two national-level data sets, i.e. NFHS-4 and NFHS-3, showed that the prevalences of undernutrition and anaemia reduced by 13 and 5 percentage points, respectively, from NFHS-3 to NFHS 4, i.e. over the 10-year period from 2004-05 to 2015-16, whereas overnutrition increased by 4 percentage points during this period. Analysis of possible socio-demographic factors and eating habits thought to influence underweight, obesity and anaemia revealed substantive causal relations. More specifically, education and eating habit were found to influence underweight, overweight or obesity and anaemia significantly. The nutritional status of a woman was also found to depend on household income.

Out-of-pocket payment and financial risk protection for breast cancer treatment: a prospective study from India.

Background: Available data on cost of cancer treatment, out-of-pocket payment and reimbursement are limited in India. We estimated the treatment costs, out-of-pocket payment, and reimbursement in a cohort of breast cancer patients who sought treatment at a publicly funded tertiary cancer care hospital in India. Methods: A prospective longitudinal study was conducted from June 2019 to March 2022 at Tata Memorial Centre (TMC), Mumbai. Data on expenditure during each visit of treatment was collected by a team of trained medical social workers. The primary outcome variables were total cost (TC) of treatment, out-of-pocket payment (OOP), and reimbursement. TC included cost incurred by breast cancer patients during treatment at TMC. OOP was defined as the total cost incurred at TMC less of reimbursement. Reimbursement was any form of financial assistance (cashless or repayment), including social health insurance, private health insurance, employee health schemes, and assistance from charitable trusts, received by the patients for breast cancer treatment. Findings: Of the 500 patients included in the study, 45 discontinued treatment (due to financial or other reasons) and 26 died during treatment. The mean TC of breast cancer treatment was ₹258,095/US$3531 (95% CI: 238,225, 277,934). Direct medical cost (MC) accounted for 56.3% of the TC. Systemic therapy costs (₹50,869/US$696) were higher than radiotherapy (₹33,483/US$458) and surgery costs (₹25,075/US$343). About 74.4% patients availed some form of financial assistance at TMC; 8% patients received full reimbursement. The mean OOP for breast cancer treatment was ₹186,461/US$2551 (95% CI: 167,666, 205,257), accounting for 72.2% of the TC. Social health insurance (SHI) had a reasonable coverage (33.1%), followed by charitable trusts (29.6%), employee health insurance (5.1%), private health insurance (4.4%) and 25.6% had no reimbursement. But SHI covered only 40.1% of the TC of treatment compared to private health insurance that covered as much as 57.1% of it. Both TC and OOP were higher for patients who were younger, belonged to rural areas, had a comorbidity, were diagnosed at an advanced stage, and were from outside Maharashtra. Interpretation: In India, the cost and OOP for breast cancer treatment are high and reimbursement for the treatment flows from multiple sources. Though many of the patients receive some form of reimbursement, it is insufficient to prevent high OOP. Hence both wider insurance coverage as well as higher cap of the insurance packages in the health insurance schemes is suggested. Allowing for the automatic inclusion of cancer treatment in SHI can mitigate the financial burden of cancer patients in India. Funding: This work was funded by an extramural grant from the Women's Cancer Initiative and the Nag Foundation and an intramural grant from the International Institute of Population Sciences, Mumbai.

Prospective Study of Incidence and Impact of Comorbidities on Breast Cancer Survival from India.

PURPOSE: To report comorbidity burden in newly-diagnosed treatment-naïve breast cancer patients and its effect on survival. METHODS: Prospective observational study in which demographic, comorbidity and outcome data from a consecutive cohort of patients diagnosed and treated between September 2019 to September 2021 were collected. Charlson Comorbidity Index (CCI) score was calculated for all and proportion of each comorbidity was determined at diagnosis (baseline), at conclusion and six-months post-treatment. Univariate and multivariate analysis was done for impact of various demographic and disease-related factors on the incidence of comorbidities as well as on progression free survival (PFS) and overall survival (OS). RESULTS: Out of five hundred patients who consented for the study, 416 patients completed planned treatment and only 206 patients had physical follow-up due to COVID-19 pandemic. Incidence of comorbidity at the three time-points was 24%, 32% and 26% respectively. The difference was significant compared to baseline at both the time-points (p<0.05). Hypertension and diabetes were the most common types (incidence 15%-21% and 12-18% respectively) of comorbidities. Advancing age, post-menopauusal status and not being married were significant factors for presence of comorbidities. Median follow-up was 27 months (95% CI 26.25-28.55 months). Presence of multiple comorbidities was a poor prognostic factor for both PFS (2-yr PFS 85% vs 77%) and OS (2-yr OS 89% vs 79%) (both p=0.04) but no such correlation for CCI score. CONCLUSION: Breast cancer treatment impacted incidence of comorbidities. Presence of multiple comorbidities had an adverse impact on survival. Hence, further research on treatment optimization is required in patients with substantial comorbidities.

Health-Related Quality of Life (HRQoL) Using EQ-5D-5L: Value Set Derived for Indian Breast Cancer Cohort.

OBJECTIVE: The purpose of this study was to report quality of life of newly diagnosed breast cancer patients from India in a large cohort using the EQ-5D-5L instrument. METHODS: The study used longitudinal data of 500 breast cancer and 200 non-cancer subjects registered at our centre, during June 2019 and March 2022. The EQ-5D-5L and EQ-VAS instruments were used to measure and compare utility scores among cancer and non-cancer subjects. Descriptive statistics were analyzed and Tobit regression model were used to confirm the predictors of the utility score. RESULTS: The cancer subjects had a mean EQ-ED-5L utility score of 0.8703 (SD=0.121), 0.8745 (SD=0.094) and 0.8902 (SD=0.107) at the time of baseline, completion and follow up surveys respectively.  EQ-5D-5L values had significantly worsened after diagnosis of cancer as compared to the non-cancer cohort (0.87 vs. 0.93, p value 0.000). EQ-5D-5L utility scores as per stage for the cancer cohort were 0.88, 0.86 and 0.83 respectively for stage I-II, III and IV. Similarly, the EQ-VAS scores for stage I-II, III and IV were 74.9, 72.6 and 73.2 respectively. Multivariate analysis confirmed strong association of age, religion and income with the utility-values. CONCLUSION: This is the first longitudinal study reporting the utility scores derived from a large cohort of breast cancer patients demonstrating lower utility scores compared to non-cancer cohort. The utility scores also improve post treatment completion for cancer patients and decrease with higher stage at diagnosis. This information will be useful for future health economic research in India pertaining to breast cancer.

Economic Distress of Breast Cancer Patients Seeking Treatment at a Tertiary Cancer Center in Mumbai during COVID-19 Pandemic: A Cohort Study.

BACKGROUND: Cancer treatment during nationwide lockdown due to the COVID-19 pandemic has posed several challenges in the delivery of cancer care and carries tremendous potential sequel of impoverishing the households. This study aims to examine the economic distress faced by breast cancer patients receiving treatment at Tata Memorial Center (TMC) Mumbai, India during the nationwide lockdown initiated in March 2020 following the outbreak of COVID-19. METHODS: A total of 138 non-metastatic breast cancer patients who were accrued in this study at TMC before imposing of lockdown, and their treatment was impacted because of the COVID-19 outbreak, were interviewed. Telephonic interviews were conducted using a structured schedule which contained information on household and demographic characteristics of the patients, knowledge about COVID-19, their daily expenditure for treatment, difficulties faced during lockdown and how they met expenditures. Descriptive statistics and logistic regression were used in the analyses. RESULTS: The average monthly expenditure of cancer patients had increased by 32% during the COVID-19 period while the mean monthly household income was reduced by a quarter. More than two-thirds of the patients had no income during the lockdown. More than half of the patients met their expenditure by borrowing money, 30% of the patients used their savings, 28% got charity and 25% used household income. About 81% of the patients had reported shortage of money, 32%  reported shortage of food and 28% reported shortage of medicine. The distress financing was significantly higher among patients receiving treatment in Mumbai compared to those receiving treatment at their native cities (67% vs. 46%), patients under 40 years of age, illiterate, currently married, Muslim and staying at a rented house. CONCLUSION: The incremental expenditure coupled with reduced or no income due to the closure of economic activities in the country imposed severe financial stress on breast cancer patients.

Unintended effects of Janani Suraksha Yojana on maternal care in India.

BACKGROUND: The Janani Suraksha Yojana (JSY) is the largest ever conditional cash transfer programme worldwide. It primarily aimed to reduce the maternal and child mortality by increasing the facility based delivery in India. Besides, the JSY has resulted in reduction of out-of-pocket expenditure for delivery care and increased antenatal care. Though studies have examined the direct outcome of JSY, limited studies have attempted to understand the unintended effects (indirect) of the programme. The aim of this study is to examine the effect of JSY on contraceptive use, initiation of breast feeding and postnatal check-up in India. DATA & METHODS: Data from the National Family Health Survey 4, 2015-16 was used in the analyses. A total of 148,746 institutional births in five years preceding the survey were analysed and the analyses were carried out for Low Performing States (LPS) and High Performing States (HPS). Descriptive statistics and the propensity score matching were used to understand the unintended effects of JSY. RESULTS: In India, the use of contraception, early initiation of breastfeeding and postnatal check up was consistently higher among JSY beneficiaries compared to non-JSY beneficiaries. Among JSY beneficiaries, about 45% of the mothers breastfed their child within one hour compared to 42% of the JSY non-beneficiaries. The pattern was almost similar for postnatal check-up. The variations in contraceptive use, breastfeeding practice and postnatal check-up among JSY beneficiaries were higher in LPS states compared to HPS. For instance, in LPS, among JSY beneficiaries, about 58% mothers breastfed their child within one hour of delivery compared to 46% in HPS. Controlling for socio-economic covariates, the JSY beneficiaries in LPS were 12% more likely to use contraception, 8% were more likely to initiate the breast feeding within one hour of child delivery and 6% were more likely to get their postnatal check-up than their counterparts in HPS. DISCUSSION: The unintended effects of JSY were strong and significant in the low performing states. The coverage of JSY should be further extended and the programme needs to be continued.