Background: Out-of-pocket costs pose a substantial economic burden to cancer patients and their families. The purpose of this study was to evaluate the literature on out-of-pocket costs of cancer care. Methods: A systematic literature review was conducted to identify studies that estimated the out-of-pocket cost burden faced by cancer patients and their caregivers. The average monthly out-of-pocket costs per patient were reported/estimated and converted to 2018 USD. Costs were reported as medical and non-medical costs and were reported across countries or country income levels by cancer site, where possible, and category. The out-of-pocket burden was estimated as the average proportion of income spent as non-reimbursable costs. Results: Among all cancers, adult patients and caregivers in the U.S. spent between USD 180 and USD 2600 per month, compared to USD 15–400 in Canada, USD 4–609 in Western Europe, and USD 58–438 in Australia. Patients with breast or colorectal cancer spent around USD 200 per month, while pediatric cancer patients spent USD 800. Patients spent USD 288 per month on cancer medications in the U.S. and USD 40 in other high-income countries (HICs). The average costs for medical consultations and in-hospital care were estimated between USD 40–71 in HICs. Cancer patients and caregivers spent 42% and 16% of their annual income on out-of-pocket expenses in low- and middle-income countries and HICs, respectively. Conclusions: We found evidence that cancer is associated with high out-of-pocket costs. Healthcare systems have an opportunity to improve the coverage of medical and non-medical costs for cancer patients to help alleviate this burden and ensure equitable access to care.

In this review we aimed to determine the economic impact of epilepsy and factors associated with costs to individuals and health systems. A narrative systematic review of incidence and case series studies with prospective consecutive patient recruitment and economic outcomes published before July 2014 were retrieved from Medline, Embase and PsycInfo. Of 322 studies reviewed, 22 studies met the inclusion criteria and 14 were from high income country settings. The total costs associated with epilepsy varied significantly in relation to the duration and severity of the condition, response to treatment, and health care setting. Where assessed, ‘out of pocket’ costs and productivity losses were found to create substantial burden on households which may be offset by health insurance. However, populations covered ostensibly for the upfront costs of care can still bear a significant economic burden. Epilepsy poses a substantial economic burden for health systems and individuals and their families. There is uncertainty over the degree to which private health insurance or social health insurance coverage provides adequate protection from the costs of epilepsy. Future research is required to examine the role of different models of care and insurance programs in protecting against economic hardship for this condition, particularly in low and middle income settings.

The Wagner Model provides a framework that can help to facilitate health system transition towards a chronic care oriented model. Drawing on elements of this framework as well as health policy related to patient centred care, we describe the health needs of patients with chronic illness and compare these with services which should ideally be provided by a patient-centred health system. This paper aims to increase understanding of the challenges faced by chronically ill patients and family carers in relation to their experiences with the health care system and health service providers. We interviewed patients, carers and health care professionals (HCPs) about the challenges faced by people living with complicated diabetes, chronic heart failure or chronic obstructive pulmonary disease. Patients indicated that they had a range of concerns related to the quality of health care encounters with health care professionals (HCPs), with these concerns being expressed as needs or wants. These included: 1) the need for improved communication and information delivery on the part of HCPs; 2) well organised health services and reduced waiting times to see HCPs; 3) help with self care; 4) greater recognition among professionals of the need for holistic and continuing care; and 5) inclusion of patients and carers in the decision making processes. In order to address the challenges faced by people with chronic illness, health policy must be more closely aligned with the identified needs and wants of people affected by chronic illness than is currently the case.

Background and Objective: Psychosocial costs, or quality of life costs, account for psychological distress, pain, suffering and other negative experiences associated with cancer. They contribute to the overall economic burden of cancer that patients experience. But this category of costs remains poorly understood. This hinders opportunities to make the best cancer control policy decisions. This study explored the psychosocial cost burden associated with cancer, how studies measure psychosocial costs and the impact of this burden.Methods: A systematic literature review of academic and grey literature published from 2008 to 2018 was conducted by searching electronic databases, guided by the Institute of Medicine’s conceptualization of psychosocial burden. Results were analyzed using a narrative synthesis and a weighted proportion of populations affected was calculated. Study quality was assessed using the Ottawa‐Newcastle instrument.Results: A total of 25 studies were included. There was variation in how psychosocial costs were conceptualized and an inconsistent approach to measurement. Most studies measured social dimensions and focused on the financial consequences of paying for care. Fewer studies assessed costs associated with the other domains of this burden, including psychological, physical, and spiritual dimensions. Fourty‐four percent of cancer populations studied were impacted by psychosocial costs and this varied by disease site (38%‐71%). Two studies monetized the psychosocial cost burden, estimating a lifetime cost per case ranging from CAD$427753 to CAD$528769. Studies were of varying quality; 60% of cross‐sectional studies had a high risk of bias.Conclusions: Consistency in approach to measurement would help to elevate this issue for researchers and decision makers. At two‐thirds of the total economic burden of cancer, economic evaluations should account for psychosocial costs to better inform decision‐making. More support is needed to address the psychosocial cost burden faced by patients and their families.

Objectives: To examine the household economic consequences that are associated with out-of-pocket spending for the care and management of chronic obstructive pulmonary disease (COPD). Methods: A cross-sectional study. A self-administered questionnaire was posted to all patients enrolled ( n = 656) in the Respiratory Ambulatory Care Service in western Sydney, Australia, between 1 January 2001 and 31 August 2008. Two hundred and eighteen completed questionnaires were received. Results: One hundred and sixty-nine (78%) respondents experienced economic hardship while managing their illness. Fifty-nine (27%) reported being unable to pay for medical or dental expenses, 38 (18%) were unable to pay for medication, 59 (27%) were unable to pay rent or mortgage and 40 (19%) were unable to pay utility bills. Respondents experiencing economic hardship paid more out-of-pocket overall ([ ] versus [ ]; t₁₄₈ = −2.03, P = 0.04) and for medications and oxygen specifically ([ ] versus [ ]; t₈₃ = −3.98, P < 0.0001). Fifty-six (46%) respondents had catastrophic levels of out-of-pocket spending which made them 7.5 times more likely to experience economic hardship (95% confidence interval [CI]: 1.2-46.3). Conclusions: The costs associated with living with COPD make it difficult for patients and their families to afford necessary living expenses while also paying health care expenses. This is alarming within Australia where a well-funded universal health insurance system is in place. Rising co-payments for medications and private medical consultations, poorly subsidised health support (e.g. home oxygen), non-health logistics (e.g. transport) and eligibility barriers for existing social support are making chronic illness management seriously economically stressful, especially for those with low incomes, including the retired.

Chronic kidney disease (CKD) poses a financial burden on patients and their households. This descriptive study measures the prevalence of economic hardship and out-of-pocket costs in an Australian CKD population. A cross-sectional study of patients receiving care for CKD (stage III-V) in Western Sydney, Australia using a structured questionnaire. Data collection occurred between November 2010 and April 2011. Multivariate analyses assessed the relationships between economic hardship and individual, household and health system characteristics. The study included 247 prevalent CKD patients. A mean of AUD$907 per three months was paid out-of-pocket resulting in 71% (n=153) of participants experiencing financial catastrophe (out-of-pocket costs exceeding 10% of household income). Fifty-seven percent (n=140) of households reported economic hardship. The adjusted risk factors that decreased the likelihood of hardship included: home ownership (OR: 0.32, 95% CI: 0.14-0.71), access to financial resources (OR: 0.24, 95% CI: 0.11-0.50) and quality of life (OR: 0.12, 95% CI: 0.02-0.56). The factors that increased the likelihood of hardship included if income was negatively impacted by CKD (OR: 4.80, 95% CI: 2.17-10.62) and concessional status (i.e. receiving government support) (OR: 3.09, 95% CI: 1.38-6.91). Out-of-pocket costs and financial catastrophe were not found to be significantly associated with hardship in this analysis. This study describes the poorer economic circumstances of households affected by CKD and reinforces the inter-relationships between chronic illness, economic well-being and quality of life for this patient population.