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Financial Toxicity After Cancer in a Setting With Universal Health Coverage: A Call for Urgent Action
Abstract
Financial toxicity negatively affects the well-being of cancer survivors. We examined the incidence, cost drivers, and factors associated with financial toxicity after cancer in an upper-middle-income country with universal health coverage.
Through the Association of Southeast Asian Nations Costs in Oncology study, 1,294 newly diagnosed patients with cancer (Ministry of Health [MOH] hospitals [n = 577], a public university hospital [n = 642], private hospitals [n = 75]) were observed in Malaysia. Cost diaries and questionnaires were used to measure incidence of financial toxicity, encompassing financial catastrophe (FC; out-of-pocket costs ≥ 30% of annual household income), medical impoverishment (decrease in household income from above the national poverty line to below that line after subtraction of cancer-related costs), and economic hardship (inability to make necessary household payments). Predictors of financial toxicity were determined using multivariable analyses.
One fifth of patients had private health insurance. Incidence of FC at 1 year was 51% (MOH hospitals, 33%; public university hospital, 65%; private hospitals, 72%). Thirty-three percent of households were impoverished at 1 year. Economic hardship was reported by 47% of families. Risk of FC attributed to conventional medical care alone was 18% (MOH hospitals, 5%; public university hospital, 24%; private hospitals, 67%). Inclusion of expenditures on nonmedical goods and services inflated the risk of financial toxicity in public hospitals. Low-income status, type of hospital, and lack of health insurance were strong predictors of FC.
Financial toxicity describes the harmful economic burden faced by patients diagnosed with cancer.1 It has far-reaching impacts on the quality of life, adherence to treatment, and survival of patients with cancer, as well as the future prospects of the affected families.2-4
The Association of Southeast Asian Nations Costs in Oncology (ACTION) study, which observed nearly 10,000 newly diagnosed patients with cancer from Malaysia, Thailand, Indonesia, Philippines, Vietnam, Lao People’s Democratic Republic, Cambodia, and Myanmar, was conducted to determine the impact of cancer on financial well-being and quality of life in low- and middle-income countries (LMICs).5 The study had recently demonstrated that a cancer diagnosis in the region, reflecting a range of human development stages typically seen across low- and middle-income regions, may lead to disastrous impacts. Approximately 75% of patients were either dead or suffered catastrophic health expenditures within 1 year of diagnosis. It was also highlighted that the adverse economic outcomes after cancer in the overall study were largely attributed to payments for medical care encompassing inpatient and outpatient services, as well as purchase of drugs and medical supplies.6
Given the varying economic strengths and diverse health care financing mechanisms among the participating countries in the ACTION study, country-specific analysis is expected to yield unique insights into drivers of financial toxicity in resource-limited countries. Notably, a previous review on health financing reforms in Southeast Asia had indicated that context-specific evidence is vital where regular assessment of cost drivers is needed to make progress.7 Such knowledge, importantly, may also facilitate informed decision making in prioritizing and allocating the limited health care budget in other LMICs outside the region.
Malaysia is an upper-middle-income country, which has made good progress toward universal health coverage (UHC) via a mixed public and private delivery system.7 Public health care in Malaysia, which is delivered mainly through the Ministry of Health (MOH)-owned facilities as well as several public university hospitals, is funded predominantly from general taxation. Private health care, however, is largely delivered through for-profit hospitals and clinics, and is funded by a mixture of out-of-pocket (OOP) payments, private health insurance, and employer-sponsored care.8 In this study, we examined the incidence, cost drivers, and factors associated with financial toxicity (financial catastrophe [FC], medical impoverishment, and economic hardship [EH]) in patients surviving cancer in Malaysia.
Data were derived from the ACTION study, a multicountry, prospective longitudinal study.9 In Malaysia, 1,662 participants were recruited through the ACTION project. The cohort comprised newly diagnosed patients with cancer with solid and nonsolid tumors from 12 general government (MOH-owned) hospitals, one public university hospital, and two private hospitals, located across nine Malaysian states. Overall, 1,294 cancer survivors were included in the present analysis after exclusion of 158 patients who had died and those who were lost to follow-up or did not provide data on annual household income at 1 year (n = 210). In this study, individuals were considered cancer survivors from the time of diagnosis through the balance of their lives.10 The study received approval from the institutional ethical committees. Written informed consent was obtained.
At baseline, face-to-face interviews were conducted to collect data on age, sex, marital status, type of hospital, highest attained education, employment status, self-reported annual household income, health insurance status, and experience of EH during the preceding calendar year. Information on cancer site, cancer stage at diagnosis, and treatment (surgery, chemotherapy, radiotherapy, hormone therapy) were obtained from medical records at 3 and 12 months after diagnosis.
Illness-related payments for conventional medical care (inpatient care; outpatient services; purchase of medicines, medical supplies, or equipment), traditional and complementary medical care (traditional healers, homeopathy, supplements, and so on), and goods and services related to cancer care (transportation, meals, lodging, parking, childcare, personal items, and so on), which were directly incurred by patients and not reimbursed by insurance (OOP) were measured during the 3- and 12-month follow-up-interviews. This was aided by cost diaries, which were supplied at baseline to study participants to record OOP costs. Data on annual household income and experience of EH in the year after cancer diagnosis were also collected at the 12-month interview. Data on vital status were obtained from medical records and through follow-up with patients or the next of kin.
Incidence of FC, EH, and medical impoverishment at 1 year after cancer diagnosis were regarded as measures of financial toxicity as a result of cancer. These outcomes were not mutually exclusive; FC was defined as OOP illness-related costs at 12 months equal to 30% or more of the annual household income.11,12 Medical impoverishment was defined as the reported decline in household income at 12 months from above the prevailing national poverty line to below that line after subtraction of OOP costs. EH was defined as the inability to make necessary household payments, such as housing, energy, food, and health care costs after a diagnosis of cancer, as assessed in the questionnaires.9 In analyzing incidence of EH, patients who already reported EH at baseline were excluded.
Participants’ demographic, socioeconomic, and clinical details were compared across household income categories (low: monthly income ≤ US$603; middle: monthly income of US$604 to US$1,207; and high: monthly income > US$1,207). Occurrences of financial toxicity across the different types of recruiting hospitals (MOH, university, private) were compared. Types of payments leading to (ie, cost drivers) financial toxicity were determined. Multivariable logistic regression analyses were used to identify the predictors of FC and medical impoverishment. Odds ratios were considered statistically significant if the 95% CI did not include 1. All analyses were performed using IBM SPSS Statistics version 21 (IBM, Armonk, NY).
The cohort comprised participants with breast cancer (n = 424; 33%), hematologic malignancies (n = 278; 22%), gastrointestinal cancers (n = 253; 20%), female reproductive cancers (n = 81; 6.3%), mouth and oropharyngeal cancers (n = 92; 7.1%), respiratory cancers (n = 62; 4.8%), and other malignancies (n = 104; 8.0%; Table 1; Appendix Table A1, online only). In patients with available data on cancer stage, more than half were diagnosed with stage III or stage IV at initial presentation. Overall, 577 patients were recruited from MOH-owned hospitals, whereas 642 patients were from the public university hospital (Table 1). Approximately half of the patients from these public hospitals were from low-income families. However, 48 of the 75 patients from the private hospitals were from high-income households. Thirty percent of participants had some form of health insurance coverage, including private health insurance (20%) and employer-sponsored care from either the public or private sectors (10%). Twenty-six percent of patients (n = 337) reported experiencing EH during the year preceding study enrollment (Table 1): 24% in MOH hospitals, 31% in the public university hospital, and 5% in private hospitals (Appendix Table A1). Thirty-three patients were from households with earnings below the national poverty threshold at baseline.
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At the 12-month follow-up, payments for conventional medical care made up 39% of the total OOP costs borne by the affected households. This proportion, however, varied substantially by type of hospital: 18% in MOH hospitals, 29% in the public university hospital, and 92% in private hospitals. Overall, 29% of the cancer survivors reported spending on traditional and complementary medicine, where usage did not vary significantly by income levels but only by type of hospital (MOH, 28%; university hospital, 32%; private, 7%; P < .001; results not shown).
The overall incidence of FC among the cancer survivors at 1 year was 51% (n = 665), ranging from 33% in MOH hospitals to 65% in the public university hospital and 72% in the private hospitals (Table 2). Of the 655 survivors reporting FC, 19% had private health insurance (results not shown). It was also noted that among the 54 participants from the private hospital who experienced FC, 36 were covered by private health insurance.
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A closer look at the drivers of financial toxicity among the Malaysian cancer survivors revealed that 18% had experienced FC from OOP costs attributed to conventional medical care alone (Table 2). The proportion incurring catastrophic payments escalated further, to 51% after inclusion of the nonmedical payments for goods and services related to cancer care (such as transportation, meals, parking fees, and lodging), on top of payments made for medical care. However, detailed data on types of nonmedical expenses were not available for most participants, where only aggregated data were reported. It was interesting to note that the levels of FC varied within the public health care system. While one third of the cancer survivors from MOH hospitals had incurred catastrophic expenditures, close to two thirds were affected in the university hospital (Table 2). In MOH facilities, catastrophic OOP payments attributed solely to conventional medical care were only 5%, compared with 24% in the university hospital. It was also observed that among participants recruited from the MOH hospitals, additional expenditures on traditional and complementary medicine doubled the incidence of FC (Table 2). A common observation in both these settings nonetheless was that apart from costs related to medical care, the payments for nonmedical goods and services seemed to add substantially to the financial distress. In the private settings, a majority of participants experienced catastrophic expenditures mainly as a result of payments for conventional medical care (Table 2).
Among 1,261 cancer survivors from families reporting an annual household income above the national poverty line, 36% were medically impoverished at 1 year (Table 2). Overall, payments for conventional medical care alone pushed 13% of households to medical impoverishment (Table 2). Inclusion of nonmedical payments related to illness explained additional inflation in the rate of medical impoverishment. Nonetheless, payments for conventional medical care remained the main driver of impoverishment in private hospitals.
Multivariable logistic regression analyses showed that income status and type of hospital were independent predictors of financial toxicity (Table 3). Compared with patients from high-income households, those from lower income families were up to six times more likely to incur catastrophic health expenditures. Patients treated in the public university hospital or private hospitals were associated with greater risk of FC and impoverishment compared with their counterparts treated in MOH hospitals. The lack of health insurance was independently associated with doubling of risk of incurring catastrophic illness-related payments. Patients surviving hematologic malignancies, as well as those who did not receive chemotherapy, were found to have a lower risk of FC, after adjustment for demographic, socioeconomic, and other clinical characteristics.
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Among the 957 participants who were financially solvent at recruitment, 448 reported experiencing some form of EH by the end of 12 months. Of these, 12% had struggled to purchase medicines, and 11% could not pay their rent or mortgages. Close to 10% reported that their households were unable to pay utility bills as a result of their disease (not mutually exclusive). To cope with EH, 25% of affected families had exhausted savings that were set aside for other uses, 15% obtained financial assistance from family and friends, and approximately 5% sold their assets or took personal loans (not mutually exclusive).
This study showed that a high proportion of households in Malaysia experienced financial toxicity as a result of cancer within just 1 year after diagnosis. Marked institutional variations in levels of financial toxicity were observed, even within the public health care system. Apart from payments for conventional medical care, expenditures on nonmedical goods and services seemed to be important drivers of financial toxicity after cancer. Low-income status, type of hospital, and health insurance status were strong predictors of FC.
At the population level, the Malaysian health care system has been consistently shown to provide good financial risk protection for health, a finding that has been mainly attributed to the delivery of low-priced care via the public health system.13-16 However, the present findings emphatically demonstrate that patients with complex chronic diseases such as cancer who require long-term and potentially expensive therapies are not fully protected against financial hardships in Malaysia.
This study shows substantial differences in the extent of financial risk protection conferred within the Malaysian public health care system, where catastrophic OOP payments as a result of conventional medical care were substantially lower in MOH hospitals compared with the university hospital. Although both hospitals are considered public facilities, the fee structures and package of subsidized care differ between the two. The MOH receives funding from general taxation to provide low-priced cancer care from a network of tertiary hospitals and oncology centers in Malaysia. The university hospitals, meanwhile, come under the purview of the Ministry of Education and are partially funded from taxation and partially from direct patient fees. As a result, the MOH facilities are able to provide a more comprehensive package of subsidized cancer care at lower prices to their patients compared with those seeking care in the university hospitals. The present findings provide compelling evidence that the disparities in funding between the public hospitals should be addressed urgently to make way for a standardized fee structure.
It also seems that OOP payments after cancer remain high in private hospitals, with approximately 70% of the affected patients experiencing financial toxicity, of whom a majority had private health insurance. It is, however, acknowledged that patients treated in private hospitals were underrepresented in this study (approximately 6%), because the rates of refusal to participate in these hospitals were high. Although we remain cautious with our interpretations because of this limitation, these results raise additional questions, including why some patients with cancer from low-income households or those with prior EH sought expensive private medical care. This may be attributed, to some extent, to the long waiting time for diagnostic and curative services in the Malaysian public hospitals, which has been a constant source of patient dissatisfaction in the country.17
In the regional study, although 29% of patients had died at 1 year, another 48% had incurred catastrophic expenditures.6 The risk of FC attributed solely to payments for conventional medical care was 37%, largely explaining the incidence of financial toxicity in the region. However, in the current study, payments for conventional medical care alone forced a relatively smaller proportion of Malaysian households (18% of 51%) into catastrophic payments. This may be a reflection of the better financial risk protection conferred through the public health care system in Malaysia compared with its Southeast Asian counterparts participating in the ACTION study. Although expenditures on traditional and complementary medicine did not seem to considerably affect the financial well-being of cancer-stricken households in the current study, it may be an important driver of financial toxicity in some pockets of the population, such as the patients seeking care in MOH hospitals. It is, however, unclear why patients with cancer from the public sector would resort to using costly traditional and complementary cancer care.
Strikingly, this study showed that when expenditures on nonmedical goods and services related to cancer care were taken into account on top of the medical as well as traditional and complementary medicine costs, the level of catastrophic expenditures soared to 51%. Although detailed data on types of nonmedical costs were not available for a vast majority of study participants, these results serve to highlight that payments for nonmedical goods and services are also important drivers of financial toxicity in settings with UHC.18 This in turn underscores the need for policymakers in LMICs to begin planning programs to provide welfare support for households affected by cancer, including income support, disability insurance and innovative noninsurance interventions,19 such as short-term loans with zero interest, which fall outside the remit of health care systems. In Malaysia, the Social Security Organisation provides social welfare protection to Malaysian employees as mandated by the Employees' Social Security Act 1969.20 Unfortunately, the Social Security Organisation has no specific schemes for cancer, rendering only patients with terminal disease eligible for financial support through the Invalidity Pension Scheme. The current study provides the evidence to call for urgent legislative reforms to enable the introduction of a scheme catering to patients with chronic diseases, including cancer.
Lower income status emerged as a strong predictor of financial toxicity in this study. It would therefore seem that the Malaysian government’s introduction of the B40 Health Scheme (PeKA B40), as well as the mySalam health insurance scheme for those in the bottom 40 economic categories (median monthly household income, US$725) is in the right direction. However, these schemes will currently cover only patients who are managed in the MOH hospitals but not those from the public university hospitals.
The lack of health insurance in the current study was independently associated with twice the risk of incurring catastrophic expenditures. This observation underscores the role of health insurance as an important means of financial risk protection for cancer-stricken households. Nonetheless, it is intriguing to note that one fifth of the survivors reporting catastrophic expenditures in the current study owned private health insurance. This calls into question the minimum essential coverage limit for cancer care in LMICs and the quality of the benefit packages, especially coverage of outpatient care.21 Given the small sample of patients with insurance ownership in the current study and the lack of information on their benefit packages, future studies are warranted to gain an understanding on the value of health insurance in LMICs.
Chemotherapy was independently associated with higher risk of financial toxicity, which may be explained by residual confounding from more advanced cancer stage at diagnosis. It is acknowledged that data on cancer stage were missing in approximately 40% of participants. Administration of chemotherapy (ie, proxy of more advanced cancer stage at diagnosis) affects workability and prolongs work absence, apart from its cost to patients.22 Moreover, the caretakers of patients receiving chemotherapy may lose their jobs or take longer to return to work, leading to financial distress.23 Patients surviving hematologic malignancies in this study had independently lower risks of financial toxicities. This is not surprising, considering that a sizable number of these patients were recruited from a single MOH referral center for hematologic illnesses, where patients benefit from a generous package of highly subsidized care, including free provision of tyrosine kinase inhibitors, which are expensive frontline drugs for chronic myeloid leukemia, and polymerase chain reaction tests to monitor treatment responses to these drugs.24,25
In conclusion, the current study highlights that cancer leads to debilitating financial outcomes in LMICs, even in countries that have achieved UHC. Country-specific analyses on drivers of financial toxicity are pertinent in these settings to facilitate policy decisions. In Malaysia, there is an urgent need to address the disparities in funding received by the public hospitals to ensure that all patients with cancer have a safety net to fall back on. The public university hospitals in Malaysia also play a crucial role in providing healthcare to both the urban and rural poor. The B40 health schemes should therefore be expanded to patients who access medical care in these hospitals. Nonetheless, provision of subsidized medical care in public hospitals alone may not be sufficient to protect the financial welfare of patients with cancer. Policies that address both the supply and demand side of pricing of all cancer care services and technologies are also needed. Innovative insurance- and noninsurance-based interventions to improve social support are urgently required. All these need the political will to engage in regulatory and legislative reforms focused on improving the overall well-being of patients surviving cancer, their families, and the community at large.
Conception and design: Nirmala Bhoo-Pathy, Gerard Chin-Chye Lim, Richard Sullivan, Matin Mellor Abdullah, Merel Kimman, Kian-Meng Chang, Pik-Pin Goh
Administrative support: Shridevi Subramaniam
Provision of study materials or patients: Gerard Chin-Chye Lim, Merel Kimman, Nur Aishah Taib, Kian-Meng Chang
Collection and assembly of data: Nirmala Bhoo-Pathy, Gerard Chin-Chye Lim, Nanthini Thevi Bhoo-Pathy, Matin Mellor Abdullah, Merel Kimman, Shridevi Subramaniam, Cheng-Har Yip
Data analysis and interpretation: Nirmala Bhoo-Pathy, Chiu-Wan Ng, Nor Saleha Ibrahim Tamin, Matin Mellor Abdullah, Merel Kimman, Marniza Saad, Nur Aishah Taib
Manuscript writing: All authors
Final approval of manuscript: All authors
Accountable for all aspects of the work: All authors
The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jop/site/ifc/journal-policies.html.
Honoraria: Roche, Pfizer
Consulting or Advisory Role: Pfizer
Speakers' Bureau: Roche, Pfizer
Research Funding: Roche, Pfizer, Novartis
Travel, Accommodations, Expenses: Roche
Honoraria: Genzyme (I), Sanofi (I)
Consulting or Advisory Role: Roche Malaysia
Honoraria: Pfizer
Consulting or Advisory Role: Pfizer (Inst)
Travel, Accommodations, Expenses: Menarini, Boehringer Ingelheim, Taiho Pharmaceutical, Fresenius Kabi
Honoraria: Roche, Astellas Pharma, Novartis
Consulting or Advisory Role: Johnson & Johnson, MSD, Astellas Pharma, Roche, AstraZeneca, Sanofi, Novartis, Pfizer
Research Funding: Johnson & Johnson, MSD, Roche
Honoraria: Biotest
No other potential conflicts of interest were reported.
Ros Suzanna Ahmad Bustamam, Nurina Musta’ani Hamedon, Suhana Abd Halim, Nor Amirah Zolkepali, Norhafizah Ahmad, Nurul Shuhada Mohd Ali, Mariana Mohammad Ali, Juaeriyah Mat Arifin, Habibah Tahir, Norpisah Ali (Hospital Kuala Lumpur, Kuala Lumpur); Cheng-Har Yip, Nur Aishah Taib, Rozita Abd Malik, Tan Gie Hooi, Woo Yin Ling, Liam Chong Kin, Gan Gin Gin, Tee Hui Hoon, Nanthini Thevi Bhoo-Pathy, Siamala Devi Sinnadurai, Prepageran Narayanan, (University Malaya Medical Centre, Kuala Lumpur and University Malaya Specialist Centre, Kuala Lumpur);Wong Toh Mee, Jennifer Jee, Ling Leh Ping, Patimah Duat, Irene Martin, Yap Ling, (Sibu Hospital, Sibu); Chooi Kheng Chiew, Yu Hang Wai, Lee Chai Yuit, Au Yit Moy, Chan Boon Jie (Hospital Seri Manjung, Seri Manjung); Zaridah bt Shaffie, Dzulhairi Baharum, Siti Ertina Asli (Hospital Tuanku Fauziah, Kangar); Nik Ahmad Nik Abdullah, Wee Bin Hoon, Wan Rosnizawati (Hospital Raja Perempuan Zainab II, Kota Bharu); Yong Pei Wen, Heng Pek Ser, Suriana Jantan, Rhevathy Kasava, Chong Kiew Moy, Saadiah Kassim (Hospital Melaka, Melaka); Ashok Kumar Nadayson, Masitah Salleh, Maheran Muhammad, Suriati Adenan (Hospital Sungai Buloh, Sungai Buloh); Lum Chee Lun, Lily Wong Lee Lee, Damica Kunsiong, Juhanah Gimbo, Victoria Madayun, Marian Madonna Mobilik, Yu Tai Ng, Judith James, Marilyn Wodjin (Queen Elizabeth Hospital, Kota Kinabalu); Flora Chin, Nadzrul Aida Mat Darus, Hamidah Hussin (Hospital Sultanah Aminah, Johor Bahru); Foo Yoke Ching, Nor Azlinda Md Nordin, Zarifah Alias (deceased; Subang Jaya Medical Centre, Subang Jaya); Anita Racheal Winfred Harold Ponnu, Nanthini Balakrishnan, Syed Carlo Edmund (Hospital Ampang, Ampang); Teoh Choon Yu, Roslin Guadih, Irene Sipin, Yuzanna Izan Kedri (Hospital Wanita dan Kanak-Kanak, Likas); Ganeshmoorthy Arumugam, Nur Nadia Renu Abdullah, Balkis Nachiah Abdul Rahim, Saleha Hashim, Shah Emilia Sarafudin (Hospital Tengku Ampuan Rahimah, Klang).
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ACKNOWLEDGMENT
This study was presented at the 2018 World Cancer Congress, Kuala Lumpur, Malaysia, October 1-4, 2018. This study was supported by an unrestricted educational grant from Roche Malaysia. We express our sincere gratitude to all the patients and their family members who participated in the ACTION study. We gratefully acknowledge the support from all the physicians and health care personnel (see Appendix, online only) who assisted with patient recruitment and study management at participating sites.
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