Relationship between income and concerns about physical changes and help-seeking by older adult cancer survivors: a secondary analysis.

OBJECTIVE: Globally, the number of older adults surviving cancer is anticipated to grow rapidly over the next decades. Cancer and its treatment can leave survivors with a myriad of challenges including physical changes which impact independence and quality of life. This project explored the relationship of income level with concerns and help-seeking for physical changes following treatment in older Canadian survivors of cancer. METHODS: A Canada-wide survey of community-dwelling survivors of cancer explored their experiences with survivorship care one to three years following completion of treatment. A secondary trend analysis examined the relationship of income with older adults' level of concern and help-seeking experiences regarding physical consequences they attributed to their cancer treatment. RESULTS: In total, 7,975 people aged 65 years and older who survived cancer responded to the survey, of whom 5,891 (73.9%) indicated annual household income. Prostate (31.3%), colorectal (22.7%) and breast (21.8%) cancer accounted for the majority of respondents. Of those who reported household income data, over 90% wrote about the impact of physical changes following treatment, their concerns about the changes, and whether they sought help for their concerns. The most frequently identified physical challenge was fatigue (63.7%). Older survivors with low annual household incomes of less than $CA25,000 reported the highest levels of concern about multiple physical symptoms. 25% or more of the survey respondents across all income levels reported difficulty finding assistance for their concerns about the physical challenges, especially in their local communities. CONCLUSION: Older survivors of cancer can experience a range of physical changes, amenable to intervention by physical therapy, yet experience challenges obtaining relevant help. Those with low income are more severely affected, even within a universal healthcare system. Financial assessment and tailored follow-up are recommended.

Patient and family financial burden associated with cancer treatment in Canada: a national study.

GOAL: To determine patient-reported financial and family burden associated with treatment of cancer in the previous 28 days across Canada. METHODS: A self-administered questionnaire (P-SAFE v7.2.4) was completed by 901 patients with cancer from twenty cancer centres nationally (344 breast, 183 colorectal, 158 lung, 216 prostate) measuring direct and indirect costs related to cancer treatment and foregone care. Monthly self-reported out-of-pocket-costs (OOPCs) included drugs, homecare, homemaking, complementary/ alternative medicines, vitamins/supplements, family care, accommodations, devices, and "other" costs. Travel and parking costs were captured separately. Patients indicated if OOPC, travel, parking, and lost income were a financial burden. RESULTS: Mean 28-day OOPCs were CA$518 (US Purchase Price Parity [PPP] $416), plus CA$179 (US PPP $144) for travel and CA$84 (US PPP $67) for parking. Patients self-reporting high financial burden had total OOPCs (33%), of CA$961 (US PPP $772), while low-burden participants (66%) had OOPCs of CA$300 (US PPP $241). "Worst burden" respondents spent a mean of 50.7% of their monthly income on OOPCs (median 20.8%). Among the 29.4% who took time off work, patients averaged 18.0 days off. Among the 26.0% of patients whose caregivers took time off work, caregivers averaged 11.5 days off. Lastly, 41% of all patients had to reduce spending. Fifty-two per cent of those who reduced spending were families earning < CA$50,000/year. CONCLUSIONS: In our Canadian sample, high levels of financial burden exist for 33% of patients, and the severity of burden is higher for those with lower household incomes.

Financial toxicity associated with a cancer diagnosis in publicly funded healthcare countries: a systematic review.

PURPOSE: Financial toxicity related to cancer diagnosis and treatment is a common issue in developed countries. We seek to systematically summarize the extent of the issue in very high development index countries with publicly funded healthcare. METHODS: We identified articles published Jan 1, 2005, to March 7, 2019, describing financial burden/toxicity experienced by cancer patients and/or informal caregivers using OVID Medline Embase and PsychInfo, CINAHL, Business Source Complete, and EconLit databases. Only English language peer-reviewed full papers describing studies conducted in very high development index countries with predominantly publicly funded healthcare were eligible (excluded the USA). All stages of the review were evaluated in teams of two researchers excepting the final data extraction (CJL only). RESULTS: The searches identified 7117 unique articles, 32 of which were eligible. Studies were undertaken in Canada, Australia, Ireland, UK, Germany, Denmark, Malaysia, Finland, France, South Korea, and the Netherlands. Eighteen studies reported patient/caregiver out-of-pocket costs (range US$17-US$506/month), 18 studies reported patient/caregiver lost income (range 17.6-67.3%), 14 studies reported patient/caregiver travel and accommodation costs (range US$8-US$393/month), and 6 studies reported financial stress (range 41-48%), strain (range 7-39%), or financial burden/distress/toxicity among patients/caregivers (range 22-27%). The majority of studies focused on patients, with some including caregivers. Financial toxicity was greater in those with early disease and/or more severe cancers. CONCLUSIONS: Despite government-funded universal public healthcare, financial toxicity is an issue for cancer patients and their families. Although levels of toxicity vary between countries, the findings suggest financial protection appears to be inadequate in many countries.

When are Pharmaceuticals Priced Fairly? An Alternative Risk-Sharing Model for Pharmaceutical Pricing.

The most common solutions to the problem of high pharmaceutical prices have taken the form of regulations, price negotiations, or changes in drug coverage by insurers. These measures for the most part transfer the burden of drug expenditures between pharmaceutical companies and payers or between payers. The aim of this study is to propose an alternative model for the relationship between the main stakeholders (the pharmaceutical companies, third party payers, and the public) involved in the price setting and purchasing of pharmaceuticals, one that encourages a more cooperative approach. We draw from principles of ethics and health economics and apply them to the context of the pharmaceutical industry. The model prioritises two objectives, (1) to make drugs financially accessible to the patients who need them, and (2) to keep pharmaceutical companies viable and profitable. It is centered around the sharing of financial risk between the main stakeholders, which we describe as 'enlightened risk sharing'. After establishing the foundations of this model, we expand on the type of policies that can follow these principles with current day examples.

Adverse Drug Reactions in Canada (2009-2018): Insights from the Canada Vigilance Database.

Annually, thousands of individuals die and tens of thousands are hospitalized in association with suspected adverse drug reactions (ADRs) in Canada. We analyzed the reports from the Canada Vigilance Adverse Reaction online database and present a synopsis of the state of ADRs in Canada between 2009 and 2018. Our synopsis includes both cross-sectional and longitudinal insights into ADR demographics, outcomes, associated drugs and disease indications. In closing, we highlight five overarching issues uncovered in our analysis, which have potential implications for future policy formulation. Further in-depth exploration is required to shine some additional light on these issues.

Elective Repeat Caesarean Section in Low-Risk Women-Economic Evaluation Comparing Births Before vs. After 39 Weeks Gestation in Ontario, Canada.

PURPOSE: To undertake an economic analysis of repeat Caesarean births in low-risk women (LRW) not in labour in Ontario who delivered at 37-38 weeks (<39 weeks) vs. 39-40 weeks (≥39 weeks) gestation. METHODS: Data from the Better Outcomes Registry & Network (BORN) Information System for fiscal years 2012-2013 and 2013-2014 meeting the definition for elective repeat CS (ERCS) for LRW between 37 and 40 weeks gestation. Costs were obtained from the Ottawa Hospital Data Warehouse and applied through to discharge. RESULTS: For April 2012 to March 2013, we extracted 3637 ERCS dyads at <39 weeks and 3282 dyads at ≥39 weeks. There were 334 NICU admissions at <39 weeks (0.92%) and 235 at ≥39 weeks (0.72%). Average neonate cost was $1247.99 (<39 weeks) vs. $1200.77 (≥39 weeks)-a difference of $47.22. Average dyad cost was $3608.92 (<39 weeks) vs. $3577.04 (≥39 weeks)-a difference of $31.88 per birth. If these births were delayed to ≥39 weeks, net savings of $173 864 and $115 947 annually would be realized on "baby only" and "dyad" costs, respectively. For April 2013 to March 2014, we extracted 2875 ERCS dyads at ≤39 weeks and 3892 dyads at ≥39 weeks. There were 216 NICU admissions ≤39 weeks (0.75%) and 224 at ≥39 weeks (0.58%). Average neonate cost was $1268.56 (<39 weeks) vs. $1126.56 (≥39 weeks)-a difference of $142.00 per birth. Average dyad cost was $3605.70 (≤39 weeks) vs. $3456.61 (≥39 weeks)-a difference of $149.08. If these births were delayed to ≥39 weeks, net annual savings of $404 842 and $428 605 would be realized on "baby only" and "dyad" costs respectively. CONCLUSIONS: Restricting repeat CS in LRW to ≥39 weeks is a cost-effective strategy.

Exploring the impact of out-of-pocket costs on the quality of life of Canadian cancer patients.

OBJECTIVE: To explore cancer patients' perspective about the impact of financial burden on quality of life. METHODS: A qualitative descriptive approach was utilized. In-depth interview transcripts from 14 survivors were subjected to a thematic analysis. RESULTS: All participants experienced reduced income and increased out-of-pocket costs following their diagnosis. None worked during their treatment interval. They described profound impacts on the social, psychological, and spiritual domains of quality of life from the financial challenges. Many were worried about having sufficient funds to support themselves in the long term and felt this added to the burden they were carrying. Most found the financial challenges surprising and unexpected. Additionally, the impact was also experienced by their family members. IMPLICATIONS: Healthcare providers ought to be aware of the potential impact financial challenges can have and the distress they bring about. A discussion about financial concerns needs to occur at the beginning of the cancer journey, with appropriate resources made available, and monitored regularly.

Design of effective interventions for smoking cessation through financial and non-financial incentives.

Smoking has a tremendous negative impact on the Canadian economy and contributes to growing costs in the healthcare system. Efforts to reduce smoking rates may therefore reduce strain on the healthcare system and free up scarce resources. Academic literature on economic smoking cessation incentives presents a countless variety of interventions that have met with varying degrees of success. This study reviews six different variables used in the design of incentives in smoking cessation interventions: direction, form, magnitude, certainty, recipient grouping, and target demographic. The purpose of this study is to provide analysis and recommendations about the contribution of each variable into the overall effectiveness of smoking cessation programs and help health leaders design better interventions according to their specific needs.

The transition from youth to adult mental health services and the economic impact on youth and their families.

The transition from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS) can be challenging for youth, their families, and healthcare providers. The purpose of this study was to identify, summarize, and assess evidence found in scholarly literature regarding the economic impact on youth and their families during the transition from CAMHS to AMHS. Relevant studies were identified through a search of 7 electronic platforms. The search identified 829 articles; 5 of which met all inclusion criteria. Evidence from the included studies suggests that, when continuity of care is lacking, transitions from CAMHS to AMHS have substantial impacts on the financial demands of youth and their families. These demands are due to increases in the cost of care, loss of employment income and productivity, and changes in insurance coverage. However, there remains limited information in this area, which highlights the need for further research.

Understanding the full breadth of cancer-related patient costs in Ontario: a qualitative exploration.

OBJECTIVE: This research informs existing work by examining the full scope of out-of-pocket costs and lost income, patients' private insurance behaviors, and their overall management of finances during their cancer treatment. The intent was to gain a deeper understanding of patient circumstances and the related costs. METHODS: Participant qualitative interviews were conducted in person during outpatient clinic visits or by telephone and were recorded between June 2011 and July 2012. Interviews were transcribed verbatim and subjected to a descriptive qualitative analysis. The research team collaborated early in the process (after three subjects were enrolled) to develop a preliminary coding framework. The coding framework was modified to incorporate additional emerging content until saturation of data was evident. Transcripts were coded using the qualitative software NVivo version 9.0. RESULTS: Fifteen patients agreed to participate in the study and 14 completed the interview (seven breast, three colorectal, two lung, and two prostate). Consistent with existing published work, participants expressed concerns regarding expenses related to medications, complementary/alternative medicines, devices, parking and travel. These concerns were exacerbated if patients did not have insurance or lost insurance coverage due to loss of work. Although many acknowledged in hindsight that additional insurance would have helped, they also recognized that at the time of their diagnoses, it was not a viable option. Previously unidentified categorical costs identified in this study included modifications to housing arrangements or renovations, special clothing, fitness costs and the impact of an altered diet. CONCLUSION: We confirmed the results of earlier Canadian quantitative work. Additionally, cost categories not previously explored were identified, which will facilitate the development of an improved and more comprehensive quantitative questionnaire for future research. Many patients indicated that supplemental health insurance would have made their cancer journey less stressful, highlighting existing gaps in the government funded health care system.

Effectiveness of Health System Services and Programs for Youth to Adult Transitions in Mental Health Care: A Systematic Review of Academic Literature.

Youth shifting to adult mental health services often report experiencing frustrations with accessing care that adequately replaces the youth services they had received. This systematic review assesses the peer reviewed evidence on services/programs aimed at addressing youth to adult transitions in mental health services. Findings suggest little data exists on the effectiveness of transition services/programs. While the available evidence supports meetings between youth and youth caseworkers prior to transitions occurring, it also verifies that this is not common practice. Other identified barriers to effective transitions were categorized as logistical (ineffective system communication), organizational (negative incentives), and related to clinical governance.

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

Impact of Income on Physical Concerns, Help Seeking, and Unmet Needs of Adult Cancer Survivors.

Purpose: Cancer treatment can have consequences for individuals which may have profound impact on daily living. Accessing assistance can be problematic. This study explores associations between income and concerns, help-seeking, and unmet needs related to physical changes following cancer treatment. Method: A national survey was conducted with cancer survivors about experiences with follow-up care one to three years after treatment. We report a trend analysis describing associations between income and cancer survivors' concerns, help-seeking, and unmet needs related to physical changes after treatment. Results: In total 5,283 cancer survivors between 18 and 64 years responded, of which 4,264 (80.7%) indicated annual household income. The majority of respondents were survivors of breast (34.4%), colorectal (15.0%), and prostate (14.0%) cancers. Over 90% wrote about experiencing physical changes following cancer treatment. Survivors with low annual household incomes of less than $25,000 (CAN) reported the highest levels of concern about multiple physical changes and were more likely to seek help to address them. Conclusions: Cancer survivors can experience various physical challenges and unmet needs following cancer treatment and difficulty obtaining relevant help across all income levels. Those with low income are more severely affected. Financial assessment and tailored follow-up are recommended.

Objectif: le traitement du cancer peut avoir de profondes conséquences sur la vie quotidienne. Il peut être difficile d'accéder à de l'aide. La présente étude explore les associations entre le revenu et les inquiétudes, la demande d'aide et les besoins non respectés liés aux changements physiques après le traitement du cancer. Méthodologie: : les chercheurs ont mené une enquête nationale auprès des survivants du cancer sur leurs expériences des soins de suivi de un à trois ans après le traitement. Ils rendent compte d'une analyse des tendances qui décrit les associations entre le revenu et les préoccupations des survivants du cancer, la demande d'aide et les besoins non respectés liés aux changements physiques après le traitement. Résultats: au total, 5 283 survivants du cancer de 18 à 64 ans ont répondu, et 4 264 (80,7 %) ont précisé leur revenu familial annuel. La majorité des répondants étaient des survivants du cancer du sein (34,4 %), du cancer colorectal (15,0 %) ou du cancer de la prostate (14,0 %). Plus de 90 % ont écrit avoir vécu des changements physiques après le traitement du cancer. Les survivants dont le revenu familial annuel était inférieur à 25 000 $ CA étaient les plus inquiets des multiples changements physiques et les plus susceptibles de demander à l'aide pour les régler. Conclusions: les survivants du cancer peuvent vivre divers changements physiques et éprouver des besoins non respectés après le traitement d'un cancer, et éprouver de la difficulté à obtenir l'aide pertinente dans toutes les catégories de revenu. Ceux qui ont un faible revenu sont plus touchés. Il est recommandé de procéder à une évaluation financière et à un suivi adapté.

Guidelines for health technologies: specific guidance for oncology products in Canada.

OBJECTIVE: Specific methodological challenges are often encountered during cancer-related economic evaluations. The objective of this study was to provide specific guidance to analysts on the methods for the conduct of high-quality economic evaluations in oncology by building on the Canadian Agency for Drugs and Technologies in Health Guidelines for the Economic Evaluation of Health Technologies (third edition). METHODS: Fifteen oncologists, health economists, health services researchers, and decision makers from across Canada identified sections in Canadian Agency for Drugs and Technologies in Health guidelines that would benefit from oncology-specific guidance. Fifteen sections of the guidelines were reviewed to determine whether 1) Canadian Agency for Drugs and Technologies in Health guidelines were sufficient for the conduct of oncology economic evaluations without further guidance specific for oncology products or 2) additional guidance was necessary. A scoping review was conducted by using a comprehensive and replicable search to identify relevant literature to inform recommendations. Recommendations were reviewed by representatives of academia, government, and the pharmaceutical industry in an iterative and formal review of the recommendations. RESULTS: Major adaptations for guidance related to time horizon, effectiveness, modeling, costs, and resources were required. Recommendations around the use of final outcomes over intermediate outcomes to calculate quality-adjusted life-years and life-years gained, the type of evidence, the source of evidence, and the use of time horizon and modeling were made. CONCLUSIONS: This article summarizes key recommendations for the conduct of economic evaluations in oncology and describes methods required to ensure that economic assessments in oncology are conducted in a standardized manner.

Linking Intermediate to Final "Real-World" Outcomes: Is Financial Toxicity a Reliable Predictor of Poorer Outcomes in Cancer?

Traditionally, economic evaluations are based on clinical trials with well-defined patient populations that exclude many patient types. By contrast, studies that incorporate general patient populations end up including those in lower income categories, some of whom have significant financial burdens (often described as financial toxicity) related to their care. Consideration of these patient burdens when examining the incremental cost-effectiveness of newer treatments from a clinical trial perspective can result in differing conclusions regarding cost-effectiveness. The challenge is to reliably assess the link between financial toxicity, quality of life and potential decisions to forego or delay care. It is also well-documented that these financial effects are not evenly distributed across populations, with those with low income and of black or Latino decent being most affected. There is a paucity of literature in this space, but some of the early work has suggested that for lung, breast, colorectal and ovarian cancers there are poorer quality-of-life scores and/or shorter overall survival for those experiencing financial toxicity. Hence, we may see both a lower quality of life and a shorter duration of life for these populations. If this is the case, additional considerations include: are the benefits of newer, more-expensive treatment strategies muted by the lack of adherence to these newer treatments due to financial concerns, and, if true, can these effects be effectively quantified as "real-world" outcomes? This rapid review examines these possibilities and the steps that may be required to examine this reliably.

Societal Perspectives and Real-World Cost-Effectiveness: Expanding the Scope of Health Economics Inquiry.

Economic evaluations of health technologies for cancer are frequently seen in the literature, but not all economic perspectives have the same frequency [...].

Experiencing financial toxicity associated with cancer in publicly funded healthcare systems: a systematic review of qualitative studies.

PURPOSE: Understanding how patients and families experience, respond to, and cope with the financial burden associated with cancer could assist in identifying future research priorities and developing relevant interventions to assist patients and families facing financial hardship. This systematic review offers a synthesis of the qualitative evidence on cancer-related financial toxicity from the perspective of patients and/or informal caregivers in publicly funded healthcare systems where it might be expected that financial protection would be strongest. METHODS: Articles published between January 1, 2005, and March 7, 2019, describing financial burden experienced by cancer patients and/or informal caregivers were identified using OVID MEDLINE Embase and PsychInfo, CINAHL, Business Source Complete, and EconLit databases. English language, peer-reviewed qualitative papers describing studies conducted in countries with predominantly publicly funded healthcare systems were eligible. Quality appraisal was conducted using CASP Quality Appraisal Checklist. Narrative synthesis was completed with extracted data and themes identified inductively by all team members. RESULTS: Twelve articles were identified as eligible. Articles reported on 10 studies conducted in Australia (n = 2), Canada (n = 2), England (n = 3), and Ireland (n = 3). The papers illustrate the complexity and multifaceted nature of experiencing financial hardship following a cancer diagnosis. Each contributes to the whole picture, providing different viewpoints regarding various and diverse forms of financial hardship, the process of confronting financial challenges, working to overcome difficulties, and coping with the resulting impacts. Synthesis of the studies suggested five themes: household and medical costs are increased, financial resources are reduced, financial change and financial hardship vary, financial hardship has many consequences, various mitigation strategies are used. CONCLUSION: Cancer patients and their families can experience a broad range of impacts when they are facing and coping with financial toxicity. Consistent gaps in support highlight that strategies to mitigate financial effects related to travel, accommodation, medications, family support, and income replacement are needed for many patients and families even in the context of publicly funded healthcare systems. IMPLICATIONS FOR CANCER SURVIVORS: Survivors need to be informed early in their cancer experience about the potential financial burden associated with cancer treatment and its impact on survivors and their family members.

Relationships between Canadian adult cancer survivors' annual household income and emotional/practical concerns, help-seeking and unmet needs.

The objective of this study was to explore the relationship among income and emotional/practical concerns, help-seeking and unmet needs for cancer survivors aged 18 to 64 years one to three years after treatment. A cross-sectional survey was mailed in 2016 to 40,790 survivors randomly selected from 10 Canadian provincial cancer registries. Thirty-three percent responded. A trend analysis was conducted for survivors most likely to be in the workforce exploring the relationship across four income levels and emotional/practical concerns, whether help was sought for identified concerns, and whether help was received. A total of 4,264 respondents, aged 18-64, provided useable data with breast (34.4%) and colo-rectal (15.0%) accounting for the primary cancer type and 32.0% reporting annual household incomes of <$50,000. More than 94% of respondents indicated having emotional or practical concerns. Between one-third and one-half of the respondents sought help for their concerns and, of those, between one-third and one-half experienced difficulty finding help or did not obtain assistance. Significant trends across income categories indicated greater percentages of those in lower income categories experienced emotional and practical concerns, rated their concerns as 'big', sought help, and had difficulty finding help to address their concerns. Clearly adult cancer survivors experience emotional and practical concerns. Healthcare professionals have important roles monitoring these concerns and connecting those who desire help to relevant services. Opportunities should be given to individuals, regardless of income level, to indicate if they have concerns and if they would like assistance.