Association between patient-reported financial burden and catastrophic health expenditures in cancer survivors.

PURPOSE: To measure rates of patient-reported financial burden, compare them across cancer types, and determine whether they are predictive of catastrophic health expenditures (CHE). METHODS: We extracted data from the Medical Expenditures Panel Survey from 2011 to 2017 to conduct a retrospective population-based cohort study and multivariable logistic regression to assess the financial burden of cancer across 16 cancer types and compare patient-reported metrics to CHE rates. RESULTS: Patients with ovarian cancer were most likely to report inability paying bills (34.5 %) and filing for bankruptcy (9.4 %), while patients with thyroid cancer were most likely to incur debt (22.4 %). Patients with kidney cancer had the highest mean debt ($46,915). CHEs were independently predicted by inability to pay medical bills (OR [95 % CI], 1.96 [1.14-3.35]) and bankruptcy filing (OR [95 % CI], 3.90 [1.21-12.60]. CONCLUSIONS AND IMPLICATIONS: We report important variations in the financial burden across cancer types and underscore the importance of assessing how patient-reported measures are related to CHEs. POLICY IMPLICATIONS: The financial burden of cancer care could explain the lack of improved outcomes with increased national health spending.

Development of a Health Insurance Navigation Program for Long-Term Childhood Cancer Survivors.

Adapting interventions to new contexts requires consideration of the needs, norms, and delivery structures of the new setting. We describe how we followed the ORBIT model of intervention development to create Health Insurance Navigation Tools (HINT), a health insurance patient navigation intervention for childhood cancer survivors. By engaging stakeholders and leveraging institutional resources, we identified and preemptively addressed real-world barriers, which may improve the feasibility and efficacy of the intervention. Using evidence-based implementation science models to adapt and refine interventions enhances rigor and reproducibility, implements checks and balances, and surmounts challenges of intervention rollout to accelerate the delivery of health insurance education to childhood cancer survivors.

Adaptation of a standardized self-reported cost questionnaire specific for the severe burn injury population (BI-CoPaQ).

Severe burn injuries (SBIs) are known to pose a significant burden on patients, caregivers, and the healthcare system. Yet, scarce data on the short and long-term clinical and economic impacts of these injuries limit the development of evidence-informed strategies and policies to better care for these patients. To fill in this gap, we adapted a previously validated self-reported out-of-pocket cost measurement questionnaire, the Cost for Patients Questionnaire (CoPaQ), to the severe burn injury survivor context. We conducted one-on-one cognitive semi-structured interviews with burn injury survivors, their caregivers, and healthcare providers to identify elements of the CoPaQ's structure and content that needed to be revised to adapt to the specific health care trajectory, service utilization, needs and expenses incurred by adult severe burn injury survivors and their caregivers. Summative content analysis was used to identify items needing to be modified, deleted, or added. Based on this information, a preliminary version of a Burn Injury Cost for Patients Questionnaire (BI-CoPaQ) was developed and subsequently pre-tested on a small sample of SBIs survivors. Further validation of this tool will be required before BI-CoPaQ can be used as the standard for the estimation of the financial burden of SBIs in this population.

Financial Toxicity of Long-Term Survivors Who Underwent Pancreatoduodenectomy for Pancreatic Ductal Adenocarcinoma.

BACKGROUND: Pancreatoduodenectomy (PD) for pancreatic cancer has a profound impact on patients' lives. However, the long-term financial implications are poorly understood. OBJECTIVE: Assess the financial burden of long-term survivors who underwent PD. METHODS: Patients who underwent PD between January 2011 and June 2019 were identified. To evaluate the long-term financial burden, patients surviving ≥ 3 years post-resection were prospectively surveyed using the Comprehensive Score for financial Toxicity (COST-FACIT) and a customized institutionally developed questionnaire. A logistic regression model predicting high financial toxicity was used to identify predictive factors. RESULTS: Among 238 eligible patients, 137 (57.6%) responded. Responders had a median age of 66 (59-73) years, with 86.7% identifying as financial prosperous or comfortable. However, 33.3% experienced financial distress due to treatment costs, 27.3% demonstrated high financial toxicity on the COST-FACIT survey, and 37.2% made sacrifices to afford treatment. Only 8.9% stated that the treatment costs influenced their decisions, and the majority (85.9%) did not discuss financial implications with healthcare providers. Multivariable analysis identified younger age as a risk factor for high financial toxicity. CONCLUSION: One in three long-term survivors experienced high financial toxicity, with younger age being a predictor. This emphasizes the need for efforts to provide comprehensive support and guidance to patients to navigate their oncological journey.

A person-reported cumulative social risk measure does not show bias by income and education.

BACKGROUND: Social risk such as housing instability, trouble affording medical care and food insecurity are a downstream effect of social determinants of health (SDOHs) and are frequently associated with worse health. SDOHs include experiences of racism, sexism and other discrimination as well as differences in income and education. The collective effects of each social risk a person reports are called cumulative social risk. Cumulative social risk has traditionally been measured through counts or sum scores that treat each social risk as equivalent. We have proposed to use item response theory (IRT) as an alternative measure of person-reported cumulative social risk as IRT accounts for the severity in each risk and allows for more efficient screening with computerized adaptive testing. METHODS: We conducted a differential item functioning (DIF) analysis comparing IRT-based person-reported cumulative social risk scores by income and education in a population-based sample (n = 2122). Six social risk items were analyzed using the two-parameter logistic model and graded response model. RESULTS: Analyses showed no DIF on an IRT-based cumulative social risk score by education level for the six items examined. Statistically significant DIF was found on three items by income level but the ultimate effect on the scores was negligible. CONCLUSIONS: Results suggest an IRT-based cumulative social risk score is not biased by education and income level and can be used for comparisons between groups. An IRT-based cumulative social risk score will be useful for combining datasets to examine policy factors affecting social risk and for more efficient screening of patients for social risk using computerized adaptive testing.

Financial burden and social implications of chronic liver disease in a patient population group in Pakistan.

Objective: To assess economic and social issues faced by cirrhotic patients & its financial burden for developing nations like Pakistan. Method: This cross-sectional study was carried out at the Department of Gastroenterology & Hepatology, Shaikh Zayed Hospital, Lahore, Pakistan during the period between July & December 2019. Patients with liver cirrhosis were recruited and information regarding disease, financial status, treatment expenses & dependency was recorded. Results: A total of 450 patients were recruited, 272 (60%) were males & 178 (40%) were females, with mean age 55.4±6.2 years. HCV was cause of cirrhosis in 86% of cases, 65% were diagnosed incidentally and 39.6% were illiterate. About 82.7% were urban while only 28.7% own their own home. Co-morbid conditions including diabetes, hypertension & ischemic heart disease were present in 54% of cases. Monthly income was

Parental and child's psychosocial and financial burden living with an inherited metabolic disease identified by newborn screening.

Newborn screening (NBS) is one of the most effective measures of secondary prevention. While the benefit of NBS on the clinical long-term outcomes of children with inherited metabolic diseases (IMD) has been demonstrated, the potential burden of families living with an early diagnosed and treated child with an IMD has not been thoroughly investigated. The aim of this longitudinal questionnaire-based study on 369 families living with a child with an IMD was to investigate the psychosocial and financial burden following a true-positive NBS. The reported psychosocial burden differed between children and their parents, and was associated with the child's age, diagnosis, and treatment. At younger ages, parent-reported burden was higher for the parents than for the individual child, while it increased for children and decreased for parents as the child grew older. Furthermore, psychosocial burden increased if the child required a strict dietary treatment and was at risk of metabolic decompensation. Regardless of diagnosis and treatment, the developmental delay of their child independently increased the parental psychosocial burden. Financial burden was reported by 24% of all families, and was higher in low-income families and in families whose children required dietary treatment. In conclusion, a substantial psychosocial and financial burden was revealed for children and their families after true-positive NBS. Since this burden is likely to have a negative impact on the long-term individual health benefits of NBS, this study underlines the importance of regularly assessing the psychosocial and financial needs of these families.

Measuring Pectus Excavatum Severity, External Caliper, or Cross-Sectional Imaging: Family Perceptions.

INTRODUCTION: Patients with pectus excavatum (PE) often undergo cross-sectional imaging (CSI) to quantify severity for insurance authorization before surgical repair. The modified percent depth (MPD), an external caliper-based metric, was previously validated to be similar to the pectus index and correction index. This study explored family perceptions of CSI and MPD with respect to value and costs. METHODS: This is a cross-sectional survey study including families of patients enrolled in an ongoing prospective multicenter study evaluating the use of MPD as an alternative to CSI for quantifying PE severity. Families of PE patients who underwent both MPD and CSI completed a survey to determine their perceptions of MPD and costs of CSI. Responses were described and associations were evaluated using chi squared, Wilcoxon rank-sum test and logistic regression as appropriate. Statistical significance was set to 0.05. RESULTS: There were 136 surveys completed for a response rate of 88%. Respondents were confident in MPD (86%) and confident in its similarity to CSI (76%). Families of females were less confident in the measurements than males (55% versus 80%, P = 0.02; odds ratio 0.30 (0.11, 0.83). Obtaining CSI required time off work/school in 90% and a copay in 60%. Nearly half (49%) of respondents reported CSI was a time/financial hardship. Increasing copay led to decreased reassurance in CSI (55%: copay > $100 versus 77%: lower copay/75%: no copay; P = 0.04). CONCLUSIONS: From the family perspective, MPD is valuable in assessing the severity of PE. Obtaining CSI was financially burdensome, particularly for those with higher copays. MPD measurements provide high value at low cost in assessing the severity of PE.

Robotics in total knee replacement: Current use and future implications.

Robotic total knee replacement (TKR) surgery has evolved over the years with the aim of improving the overall 80% satisfaction rate associated with TKR surgery. Proponents claim higher precision in executing the pre-operative plan which results in improved alignment and possibly better clinical outcomes. Opponents suggest longer operative times with potentially higher complications and no superiority in clinical outcomes alongside increased costs. This editorial will summarize where we currently stand and the future implications of using robotics in knee replacement surgery.

Out-of-Pocket Expenditure for Selected Surgeries in the Cardiology Department for Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (AB-PMJAY), Private Health Insurance, and Uninsured Patients in a Tertiary Care Teaching Hospital in Karnataka, India.

INTRODUCTION: Cardiovascular diseases are a major public health issue and the leading cause of mortality globally. The global economic burden of out-of-pocket expenditure (OOPE) for cardiovascular surgeries and procedures is substantial, with average costs being significantly higher than other treatments. This imposes a heavy economic burden. Government insurance schemes like Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (AB-PMJAY) aim to enhance affordability and access to cardiac care. METHODOLOGY: This retrospective study analyzed OOPE incurred for top cardiac surgeries under AB-PMJAY, private insurance, and uninsured patients at a tertiary care teaching hospital in Karnataka. Data of 1021 patients undergoing common cardiac procedures from January to July 2023 were analyzed using descriptive statistics (mean, median) and the Shapiro-Wilk test for normality. The study aims to evaluate financial risk protection offered by AB-PMJAY compared to private plans and inform effective policy-making in reducing the OOPE burden for surgeries in India. RESULTS: The study analyzed OOPE across 1021 patients undergoing any of four surgeries at a tertiary care teaching hospital in Karnataka. AB-PMJAY patients incurred zero OOPE across all surgeries. Uninsured patients faced the highest median OOPE, ranging from ₹1,15,292 (1390.57 USD) to ₹1,72,490 (2080.45 USD) depending on surgery type. Despite the presence of private insurance, the median out-of-pocket expenditure ranged from ₹1,689 (20.38 USD) to ₹68,788 (829.67 USD). Significant variations in OOPE were observed within different payment groups. Private insurance in comparison with AB-PMJAY had limitations like co-payments, deductibles, and limited coverage resulting in higher OOPE for patients. DISCUSSION: The results illustrate the efficacy of AB-PMJAY in reducing the financial burden and improving the affordability of cardiac procedures compared to private insurance. This emphasizes the significance of programmmes funded by the government in reducing the OOPE burden and ensuring equitable healthcare access. The comprehensive and particular estimates of OOPE for different surgical procedures, categorized by payment methods provide valuable information to guide the development of policies that aim to reduce OOPE and progress toward universal health coverage in India.

Financial hardship after cancer: revision of a conceptual model and development of patient-reported outcome measures.

Aim: This qualitative study refined a conceptual model of financial hardship and developed measures corresponding to model constructs. Methods: Eighteen women with breast cancer recruited through a comprehensive cancer center completed interviews. A qualitative framework analysis was conducted of the interviews. Results: Participants experienced varying levels of financial hardship. Protective factors included good health insurance, work accommodations and social support. Participants worried about cancer care costs and employment. Programs for alleviating financial hardship had high administrative burdens. Four preliminary financial hardship measures were developed: coping, impacts, depression and worry. Conclusion: Reducing administrative barriers to benefits could reduce financial hardship after cancer. More research is needed on the effects of out-of-network/formulary care and denials of coverage and to validate the measures.

Financial hardship is common after cancer diagnosis. This study interviewed women with breast cancer about financial hardship. Financial hardship included how participants coped with healthcare costs and reduced income. Worry and depression were also aspects of financial hardship. Administrative burdens led to financial hardship. Administrative burdens were actions patients had to take to access financial support. This study also created surveys to measure financial hardship in cancer.

This study revised a conceptual model of financial burden after cancer. Measures were developed for each financial burden dimension from the model. Reducing administrative hurdles for work accommodations and insurance could prevent burden.

Financial toxicity in living donor liver transplantation: A call to action for financial neutrality.

After 2 decades of limited growth, living donor liver transplant (LDLT) has been increasingly accepted as a promising solution to the growing organ shortage in the US. With experience, LDLT offers superior graft and patient survival with low rates of rejection. However, not all waitlisted patients have equal access to LDLT, with financial toxicity representing a substantial barrier. Potential living liver donors face indirect, direct, and opportunity costs associated with donation as well as insurance-based discrimination and variable employer leave policies. There are multiple potential national, local, and patient-centered solutions to address some of the cost-related issues associated with living LDLT. These include standardization of employer leave policies, creation of federal and state-led tax relief programs, optimization of National Living Donor Assistance Center use, engagement of independent living donor advocates, creation of financial toolkits, and encouragement of recipient or donor-led fundraising. In this piece, members of the North American Living Liver Donation Group, a consortium of 37 LDLT programs, explore these financial challenges and discuss solutions to achieve financial neutrality, where individuals can donate free from financial constraints or gains. As a community, it is imperative that we confront factors driving financial toxicity to improve equity and access to LDLT.

A multicenter evaluation of the time and travel burden on families with children treated for early-onset scoliosis.

PURPOSE: Patients who undergo growth-friendly (GF) treatment for early-onset scoliosis (EOS) undergo multiple clinical and surgical encounters. We sought to quantify the associated temporal and travel burden and estimate subsequent cost. METHODS: Four centers in an international study group combined data on EOS patients who underwent surgical GF treatment from 2006 to 2021. Data collected included demographics, scoliosis etiology, GF implant, encounter type, and driving distance. We applied 2022 IRS and BLS data or $0.625/mile and $208.2/day off work to calculate a relative financial burden. RESULTS: A total of 300 patients were analyzed (55% female). Etiologies were: congenital (33.3%), idiopathic (18.7%), neuromuscular (30.7%), and syndromic (17.3%). The average age at the index procedure was 5.5 years. For the 300 patients, 5899 encounters were recorded (average 18 encounters/patient). Aggregate encounter types were 2521 clinical office encounters (43%), 2045 surgical lengthening encounters (35%), 1157 magnetic lengthening encounters (20%), 149 spinal fusions (3%), and 27 spinal fusion revisions (0.5%). When comparing patients by scoliosis etiology or by GF implant type, no significant differences were noted in the total number of encounters or average travel distance. Patients traveled a median round trip distance of 158 miles/encounter between their homes and treating institutions (range 2.4-5654 miles), with a cumulative median distance of 2651 miles for the entirety of their treatment (range 29-90,552 miles), at an estimated median cost of $1656.63. The mean number of days off work was 18 (range 3-75), with an associated loss of $3643.50 in income. CONCLUSION: Patients with EOS averaged 18 encounters for GF surgical treatment. These patients and their families traveled a median distance of 158 miles/encounter, with an estimated combined mileage and loss of income of $5300.

Economic aspects of long-term left ventricular assist device treatment for chronic heart failure.

AIMS: Technological advances and the current shortage of donor organs have contributed to an increase in the number of left ventricular assist device (LVAD) implantations in patients with end-stage heart failure. Demographic change and medical progress might raise the number of these patients, resulting in a further increase in the number of LVAD implantations. The aim of this study was to evaluate the long-term costs of LVAD therapy and identify diagnoses resulting in expensive stays. METHODS AND RESULTS: In this retrospective analysis of prospectively collected data, all patients after implantation of a second- or third-generation LVAD by 31 March 2022 were included. In addition to demographic and survival data, revenues and case mix points were determined for each patient. Of the 163 patients included, 75.5% were male. The mean age at LVAD implantation was 52 ± 14 years. The mean survival was 1458 ± 127 days. During follow-up, the total inpatient treatment time per patient was 70 ± 87 days. The average duration of outpatient treatment was 55.1%, based on the total duration of support. The average revenue per patient for the implant stay was $193 192.35 ± $111 801.29, for inpatient readmissions $52 068.96 ± $116 630.00, and for outpatient care $53 195.94 ± $62 363.53. CONCLUSIONS: LVAD implantation in patients with end-stage heart failure leads to improved survival but a significant increase in treatment costs. Further multi-centre studies are necessary in order to be able to assess the effects of long-term LVAD treatment on the healthcare system.

Patient and Family Financial Burden in Cancer: A Focus on Differences across Four Provinces, and Reduced Spending Including Decisions to Forego Care in Canada.

GOAL: This study aimed to examine provincial differences in patient spending for cancer care and reductions in household spending including decisions to forego care in Canada. METHODS: Nine-hundred and one patients with cancer, from twenty cancer centers across Canada, completed a self-administered questionnaire (P-SAFE version 7.2.4) (344 breast, 183 colorectal, 158 lung, and 216 prostate) measuring direct and indirect costs and spending changes. RESULTS: Provincial variations showed a high mean out-of-pocket cost (OOPC) of CAD 938 (Alberta) and a low of CAD 280 (Manitoba). Differences were influenced by age and income. Income loss was highest for Alberta (CAD 2399) and lowest for Manitoba (CAD 1126). Travel costs were highest for Alberta (CAD 294) and lowest for British Columbia (CAD 67). Parking costs were highest for Ontario (CAD 103) and lowest for Manitoba (CAD 53). A total of 41% of patients reported reducing spending, but this increased to 52% for families earning

Financial Toxicity in Japanese Patients with Metastatic Renal Cell Carcinoma: A Cross-Sectional Study.

Information on the financial toxicity experienced by Japanese patients with metastatic renal cell carcinoma (mRCC) is lacking, even though Japan has its own unique public health insurance system. Thus, a web-based survey was conducted to evaluate the financial toxicity experienced by Japanese mRCC patients using the COmprehensive Score for financial Toxicity (COST) tool. This study enrolled Japanese patients who underwent, or were undergoing, systemic therapy for mRCC. The outcomes evaluated were the distribution of COST scores, the correlation between COST and quality of life (QOL) assessed by the Functional Assessment of Cancer Therapy-General (FACT-G) scale, and demographic factors associated with financial toxicity. The median (range) COST score was 19.0 (3.0-36.0). The Pearson correlation coefficient for COST and FACT-G total scores was 0.40. Univariate analysis revealed that not having private health insurance and lower household income per year were significantly associated with lower COST scores. Multivariate analyses showed that age < 65 years and not having private health insurance were significantly associated with lower COST scores. This study revealed that Japanese mRCC patients experience adverse financial impacts even under the universal health insurance coverage system available in Japan, and financial toxicity negatively affects their QOL.

A Rule-Based Solution to Opaque Medical Billing in the U.S.

Patients and physicians do not know the cost of medical procedures. Opaque medical billing thus contributes to exorbitant, rising medical costs, burdening the healthcare system and individuals. After criticizing two proposed solutions to the problem of opaque medical billing, I argue that the Centers for Medicare and Medicaid Services should pursue a rule requiring that patients be informed by the physician of a reasonable out-of-pocket expense estimate for non-urgent procedures prior to services rendered.