Development and Validation of a Dual-Language (English and Malay) Needs Assessment Tool for Breast Cancer (NeAT-BC).

Background: Needs assessment tools may be used to guide the optimisation of cancer survivorship services. We sought to develop and validate a dual-language needs assessment tool for women with breast cancer. Methods: The study comprised two phases; (I) co-design, and (II) psychometric testing. In Phase I, items were generated based on focus group discussions with patients and a literature review. These items were then translated into the Malay language. Content and face validation were undertaken with an expert panel. In phase II, 315 Malaysian women living with breast cancer were recruited. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were conducted to determine construct validity and reliability. Criterion validity was assessed using the EORTC QLQ-C30 questionnaire. Results: We co-designed and validated a 48-item dual-language needs assessment tool for breast cancer (NeAT-BC). Five underlying constructs were revealed in the EFA: (1) emotional support, (2) social and intimate relationships, (3) hospital appointments, (4) personal care and health, and (5) information and services. The NeAT-BC demonstrated good reliability across all constructs (Cronbach's alpha: 0.90 to 0.96). CFA also demonstrated acceptable convergent and divergent validity, composite reliability ≥ 0.87, and Heterotrait−Monotrait index < 0.85 for all constructs. Criterion validity was established given the significant negative correlation between overall needs and quality of life (r = −0.14; p = 0.02). The NeAT-BC took approximately 25 min to be completed and could be interviewer-administered or self-administered. Conclusion: The utilization of the NeAT-BC is expected to guide establishment of evidence-based cancer survivorship services in Malaysia, with wider potentials for adoption in other multi-ethnic and/or low-and-middle income settings.

Cancer-related costs, the resulting financial impact and coping strategies among cancer survivors living in a setting with a pluralistic health system: a qualitative study.

Background: Evidence on the financial experiences of cancer survivors living in settings with pluralistic health systems remains limited. We explored the out-of-pocket costs, the resulting financial impact and the coping strategies adopted by cancer survivors in Malaysia, a middle-income country with a government-led tax-funded public health sector, and a predominantly for-profit private health sector. Methods: Data were derived from 20 focus group discussions that were conducted in five public and private Malaysian hospitals, which included 102 adults with breast, cervical, colorectal or prostate cancers. The discussions were segregated by type of healthcare setting and gender. Thematic analysis was performed. Results: Five major themes related to cancer costs emerged: 1) cancer therapies and imaging services, 2) supportive care, 3) complementary therapies, 4) non-medical costs and 5) loss of household income. Narratives on out-of-pocket medical costs varied not only by type of healthcare setting, clinical factors and socioeconomic backgrounds, but also by private health insurance ownership. Non-health costs (e.g. transportation, food) and loss of income were nonetheless recurring themes. Coping mechanisms that were raised included changing of cancer treatment decisions, continuing work despite ill health and seeking financial assistance from third parties. Unmet needs in coping with financial distress were especially glaring among the women. Conclusion: The long-term costs of cancer (medications, cancer surveillance, supportive care, complementary medicine) should not be overlooked even in settings where there is access to highly subsidised cancer care. In such settings, patients may also have unmet needs related to non-health costs of cancer and loss of income.

Out-of-pocket payments for complementary medicine following cancer and the effect on financial outcomes in middle-income countries in southeast Asia: a prospective cohort study.

BACKGROUND: Complementary medicine, which refers to therapies that are not part of conventional medicine, comprising both evidence-based and non-evidence-based interventions, is increasingly used following a diagnosis of cancer. We aimed to investigate out-of-pocket spending patterns on complementary medicine and its association with adverse financial outcomes following cancer in middle-income countries in southeast Asia. METHODS: In this prospective cohort study, data on newly diagnosed patients with cancer were derived from the ASEAN Costs in Oncology (ACTION) cohort study, a prospective longitudinal study in 47 centres located in eight countries in southeast Asia. The ACTION study measured household expenditures on complementary medicine in the immediate year after cancer diagnosis. Participants were given cost diaries at baseline to record illness-related payments that were directly incurred and not reimbursed by insurance over the 12-month period after study recruitment. We assessed incidence of financial catastrophe (out-of-pocket cancer-related costs ≥30% of annual household income), medical impoverishment (reduction in annual household income to below poverty line following subtraction of out-of-pocket cancer-related costs), and economic hardship (inability to make necessary household payments) at 1 year. FINDINGS: Between March, 2012, and September, 2013, 9513 participants were recruited into the ACTION cohort study, of whom 4754 (50·0%) participants were included in this analysis. Out-of-pocket expenditures on complementary medicine were reported by 1233 households. These payments constituted 8·6% of the annual total out-of-pocket health costs in lower-middle-income countries and 42·9% in upper-middle-income countries. Expenditures on complementary medicine significantly increased risks of financial catastrophe (adjusted odds ratio 1·52 [95% CI 1·23-1·88]) and medical impoverishment (1·75 [1·36-2·24]) at 12 months in upper-middle-income countries only. However, the risks were significantly higher for economically disadvantaged households, irrespective of country income group. INTERPRETATION: Integration of evidence-supported complementary therapies into mainstream cancer care, along with interventions to address use of non-evidence-based complementary medicine, might help alleviate any associated adverse financial impacts. FUNDING: None.

Out-of-Pocket Costs of Complementary Medicine Following Cancer and the Financial Impact in a Setting With Universal Health Coverage: Findings From a Prospective Cohort Study.

PURPOSE: To determine household spending patterns on complementary medicine following cancer and the financial impact in a setting with universal health coverage. METHODS: Country-specific data from a multinational prospective cohort study, Association of Southeast Asian Nations Costs in Oncology Study, comprising 1,249 cancer survivors were included. Household costs of complementary medicine (healthcare practices or products that are not considered as part of conventional medicine) throughout the first year after cancer diagnosis were measured using cost diaries. Study outcomes comprised (1) shares of household expenditures on complementary medicine from total out-of-pocket costs and health costs that were respectively incurred in relation to cancer, (2) incidence of financial catastrophe (out-of-pocket costs related to cancer ≥ 30% of annual household income), and (3) economic hardship (inability to pay for essential household items or services). RESULTS: One third of patients reported out-of-pocket household expenditures on complementary medicine in the immediate year after cancer diagnosis, accounting to 20% of the total out-of-pocket costs and 35% of the health costs. Risk of financial catastrophe was higher in households reporting out-of-pocket expenditures on complementary medicine (adjusted odds ratio: 1.39 [95% CI, 1.05 to 1.86]). Corresponding odds ratio within patients from low-income households showed that they were substantially more vulnerable: 2.28 (95% CI, 1.41 to 3.68). Expenditures on complementary medicine were, however, not associated with economic hardship in the immediate year after cancer diagnosis. CONCLUSION: In settings with universal health coverage, integration of subsidized evidence-based complementary medicine into mainstream cancer care may alleviate catastrophic expenditures. However, this must go hand in hand with interventions to reduce the use of nonevidence-based complementary therapies following cancer.

Insights on emotional distress following cancer, sources of support and the unmet needs in a setting with limited supportive care services for people living with cancer.

INTRODUCTION: Delivery of supportive cancer care is often deemed a low priority in resource-limited settings. We aimed to explore the sources of emotional distress, the related support and the unmet needs of cancer survivors in Malaysia, where cancer survivorship services are presently limited. METHOD: Twenty focus group discussions were conducted with 102 cancer patients from diverse ethnic and socioeconomic backgrounds. Thematic analyses were performed. RESULTS: Patient narratives suggested that emotional distress arose from direct and indirect stressors. Direct stressors comprised physical and cognitive side effects of cancer surgery and therapies, and fear of recurrence. Indirect stressors included worry over dependent family members, financial distress following cancer, working with cancer and lack of practical support at home. Distress from altered physical appearances, fear of recurrence and lack of practical support were mainly raised by women, implying that men and women may have disproportionate emotional needs. Emotional support largely came from informal sources including self, family, friends and religion. While formal emotional support from professional counsellors and cancer support groups was acknowledged as important, it appeared to be largely lacking. Unmet needs in coping with fear of recurrence, financial distress, workplace discrimination and household chores were particularly highlighted. CONCLUSION: The unmet needs revealed in this study provide insights to initiate actionable changes to improve the emotional wellbeing of people living with cancer in settings where cancer survivorship services are still in its infancy.

Cancer and COVID-19: economic impact on households in Southeast Asia.

The ongoing COVID-19 pandemic may worsen the existing financial vulnerabilities of cancer survivors who may be experiencing a double financial hit, both from cancer-induced financial toxicity as well as economic strains arising from loss of income and prolonged unemployment following the pandemic. The impact of the pandemic is likely to be more pronounced on cancer survivors living in resource-limited settings, such as in Southeast Asia. As health care systems in the region try to streamline resources and accommodate the influx of patients from COVID-19, many in the cancer community have experienced severe disruptions in their care. The delays and disruption of timely access to cancer care could lead to patients presenting with worsened conditions and at more advanced cancer stages in which treatment options tended to be costlier. Similar to countries around the world, the various forms of movement restrictions that were enforced have aggravated the rates of unemployment, loss of wages and the limited access to support from family or friends around Southeast Asia. The economic impact of COVID-19 hits even harder on the large proportion of the population in the region that works in the informal sector, who are often one paycheque or one episode of illness away from financial catastrophe. More worryingly, the lack of a robust social security system in many Southeast Asian countries, especially in terms of income protection, could ultimately force many cancer survivors to choose between paying for their treatments, or to forego treatments, and feed their families. Early identification of cancer patients experiencing financial toxicity following the pandemic will enable timely and appropriate interventions to be undertaken by various stakeholders, potentially averting a cascade of other economic fallouts that may last for years after cancer treatment.

Understanding the Financial Needs Following Diagnosis of Breast Cancer in a Setting with Universal Health Coverage.

BACKGROUND: A diagnosis of cancer negatively impacts the financial wellbeing of affected individuals as well as their households. We aimed to gain an in-depth understanding of the financial needs following diagnosis of breast cancer in a middle-income setting with universal health coverage. MATERIALS AND METHODS: Twelve focus group discussions (n = 64) were conducted with women with breast cancer from two public and three private hospitals. This study specifically focused on (a) health costs, (b) nonhealth costs, (c) employment and earnings, and (d) financial assistance. Thematic analysis was used. RESULTS: Financial needs related to cancer treatment and health care varied according to the participant's socioeconomic background and type of medical insurance. Although having medical insurance alleviated cancer treatment-related financial difficulties, limited policy coverage for cancer care and suboptimal reimbursement policies were common complaints. Nonhealth expenditures were also cited as an important source of financial distress; patients from low-income households reported transport and parking costs as troublesome, with some struggling to afford basic necessities, whereas participants from higher-income households mentioned hired help, special food and/or supplements and appliances as expensive needs following cancer. Needy patients had a hard time navigating through the complex system to obtain financial support. Irrespective of socioeconomic status, reductions in household income due to loss of employment and/or earnings were a major source of economic hardship. CONCLUSION: There are many unmet financial needs following a diagnosis of (breast) cancer even in settings with universal health coverage. Health care professionals may only be able to fulfill these unmet needs through multisectoral collaborations, catalyzed by strong political will. IMPLICATIONS FOR PRACTICE: As unmet financial needs exist among patients with cancer across all socioeconomic groups, including for patients with medical insurance, financial navigation should be prioritized as an important component of cancer survivorship services, including in the low- and middle-income settings. Apart from assisting survivors to understand the costs of cancer care, navigate the complex system to obtain financial assistance, or file health insurance claims, any planned patient navigation program should also provide support to deal with employment-related challenges and navigate return to work. It is also echoed that costs for essential personal items (e.g., breast prostheses) should be covered by health insurance or subsidized by the government.