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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.

Autism is associated with a range of costs. This paper reviews the literature on estimating the economic costs of autism spectrum disorder (ASD). More or less 50 papers covering multiple countries (US, UK, Australia, Canada, Sweden, the Netherlands, etc.) were analysed. Six types of costs are discussed in depth: (i) medical and healthcare service costs, (ii) therapeutic costs, (iii) (special) education costs, (iv) costs of production loss for adults with ASD, (v) costs of informal care and lost productivity for family/caregivers, and (vi) costs of accommodation, respite care, and out-of-pocket expenses. A general finding is that individuals with ASD and families with children with ASD have higher costs. Education costs appear to be a major cost component for parents with children with ASD.

Background Little information is available regarding the burden of living with and managing epidermolysis bullosa, including the distinct challenges faced by patients with different disease types/subtypes. Methods A 90-question/item survey was developed to collect demographics, diagnostic data, management practices, and burden of illness information for patients with epidermolysis bullosa living in the United States. Recruitment was conducted via email and social media in partnership with epidermolysis bullosa patient advocacy organizations in the United States, and the survey was conducted via telephone interview by a third-party health research firm. Respondents aged ≥ 18 years with a confirmed diagnosis of epidermolysis bullosa or caring for a patient with a confirmed diagnosis of epidermolysis bullosa were eligible to participate in the survey. Results In total, 156 responses were received from patients ( n  = 63) and caregivers ( n  = 93) representing the epidermolysis bullosa types of simplex, junctional, and dystrophic (subtypes: dominant and recessive). A large proportion of patients (21%) and caregivers (32%) reported that the condition was severe or very severe, and 19% of patients and 26% of caregivers reported a visit to an emergency department in the 12 months prior to the survey. Among the types/subtypes represented, recessive dystrophic epidermolysis bullosa results in the greatest wound burden, with approximately 60% of patients and caregivers reporting wounds covering > 30% of total body area. Wound care is time consuming and commonly requires significant caregiver assistance. Therapeutic options are urgently needed and reducing the number and severity of wounds was generally ranked as the most important treatment factor. Conclusions Survey responses demonstrate that epidermolysis bullosa places a considerable burden on patients, their caregivers, and their families. The limitations caused by epidermolysis bullosa mean that both patients and caregivers must make difficult choices and compromises regarding education, career, and home life. Finally, survey results indicate that epidermolysis bullosa negatively impacts quality of life and causes financial burden to patients and their families.

Abstract Background Financial toxicity (FT) refers to the negative effects of the economic burden of medical care on patients that potentially lead to poor well-being and quality of life. Individuals with breast cancer are especially prone to high out-of-pocket costs (OOPCs). We aimed to evaluate the FT rate of individuals with breast cancer and determine particularly vulnerable patients. Methods A comprehensive search of PubMed/Medline, Embase, Global Index Medicus, Web of Science (WOS), and EBSCO was performed from inception to July 28, 2025. Studies on FT in participants with breast cancer were included. Pooled estimates of FT rates with 95% confidence intervals (CIs) were calculated using the random-effects model. The primary outcome was FT. The secondary outcomes included the rates of participants in high-income countries (HICs), middle-income, and low-income countries (LMICs) who incurred FT based on income, OOPCs, or patient-reported impact of expenditures during diagnosis and treatment of breast cancer. Results Sixty-six studies involving 29 426 participants with breast cancer were enrolled in our study. Most studies were from HICs (46 studies), and the others were from LMICs (20 studies). The definition of FT was significant difference among these studies. The pooled FT rate was 39.3% (95% CI, 32.4%-46.6%) in HICs and 72.3% (95% CI, 56.8%-83.8%) in LMICs. Conclusions FT is a substantial burden among patients with breast cancer worldwide. While the burden of FT is still disproportionately higher in LMICs, nearly 40% of patients in HICs also experienced FT. However, the gap between the two settings may be narrowing.

Background Financial toxicity of cancer has so far been discussed primarily in the US health care system and is associated with higher morbidity and mortality. In European health care systems, the socio-economic impact of cancer is poorly understood. This study investigates the financial burden and patient-reported outcomes of neuroendocrine (NET) or colorectal (CRC) cancer patients at a German Comprehensive Cancer Center. Methods This prospective cross-sectional study surveyed 247 advanced stage patients ( n  = 122 NET /n  = 125 CRC) at the National Center for Tumor Diseases, in Germany about cancer-related out-of-pocket costs, income loss, distress, and quality of life. Multiple linear regression analysis was performed to demonstrate the effects of economic deterioration on patients’ quality of life and distress. Results 81% ( n  = 199) of the patients reported out-of-pocket costs, and 37% ( n  = 92) income loss as a consequence of their disease. While monthly out-of-pocket costs did not exceed 200€ in 77% of affected patients, 24% of those with income losses reported losing more than 1.200€ per month. High financial loss relative to income was significantly associated with patients’ reporting a worse quality of life ( p  < .05) and more distress ( p  < .05). Conclusions Financial toxicity in third-party payer health care systems like Germany is caused rather by income loss than by co-payments. Distress and reduced quality of life due to financial problems seem to amplify the burden that already results from a cancer diagnosis and treatment. If confirmed at a broader scale, there is a need for targeted support measures at the individual and system level.

GoalTo determine patient-reported financial and family burden associated with treatment of cancer in the previous 28 days across Canada.MethodsA 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.ResultsMean 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.ConclusionsIn 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.

BackgroundAdolescent and young adult (AYA) cancer survivors are at an elevated risk of financial hardship. However, financial hardship among LGBTQ+ AYAs has not been widely explored. Thus, we used qualitative and quantitative survey data from the Horizon Study cohort to assess financial hardship of AYAs by LGBTQ+ status.MethodsMultivariable logit models, predicted probabilities, average marginal effects or differences in predicted probabilities (AME) and 95% confidence intervals (CI) were used to assess the association of LGBTQ+ status and two components of financial hardship: material and psychological. Qualitative content analysis of an open-ended survey question about financial sacrifices was used to describe the third component of financial hardship, behavioral.ResultsAmong 1,635 participants, 4.3% self-identified as LGBTQ+. Multivariable logit models controlling for demographic factors revealed that LGBTQ+ AYAs had an 18-percentage point higher probability of experiencing material financial hardship (95%CI 6–30%) and a 14-percentage point higher probability of experiencing psychological financial hardship (95%CI 2–26%) than non-LGBTQ+ AYAs. Controlling for economic factors attenuated the association of LGBTQ+ status with psychological financial hardship (AME = 11%; 95%CI – 1–23%), while the material financial hardship association remained statistically significant (AME = 14%; 95%CI 3–25%). In the qualitative analysis, LGBTQ+ AYAs frequently reported educational changes and costs (e.g., quitting school), unpaid bills and debt (e.g., medical debt, taking on credit card debt), as well as changes in housing and poor housing conditions (e.g., moving into less expensive house).ConclusionsLGBTQ + targeted and tailored interventions are needed to move toward equity for LGBTQ+ AYAs—an overlooked minority population.

Background Optimising the care of individuals with cancer without imposing significant financial burden related to their anticancer treatment is becoming increasingly difficult. The American Society of Clinical Oncology (ASCO) has recommended clinicians discuss costs of cancer care with patients to enhance shared decision-making. We sought information to guide oncologists’ discussions with patients about these costs. Methods We searched Medline, EMBASE and clinical practice guideline databases from January 2009 to 1 June 2019 for recommendations about discussing the costs of care and financial burden. Guideline quality was assessed with the AGREE-II instrument. Results Twenty-seven guidelines met our eligibility criteria, including 16 from ASCO (59%). 21 of 27 (78%) guidelines included recommendations about discussion or consideration of treatment costs when prescribing, with information about actual costs in four (15%). Recognition of the risk of financial burden or financial toxicity was described in 81% (22/27) of guidelines. However, only nine guidelines (33%) included information about managing the financial burden. Conclusions Current clinical practice guidelines have little information to guide physician-patient discussions about costs of anticancer treatment and management of financial burden. This limits patients’ ability to control costs of treatment, and for the healthcare team to reduce the incidence and severity of financial burden. Current guidelines recommend clinician awareness of price variability and high costs of treatment. Clinicians are recommended to explore cost concerns and address financial worries, especially in high risk groups. Future guidelines should include advice on facilitating cost transparency discussions, with provision of cost information and resources.

Atopic dermatitis (AD) is a common skin condition with significant associated social and financial burden. AD affects adults and children with worldwide prevalence rates of 1-20%. International study of epidemiology and geographic variability in prevalence of AD has been conducted in three phases with 1,000,000 subjects in the third phase study. Prevalence continues to vary and has changed in different regions of the world. Nigeria, the United Kingdom and New Zealand had been areas of the highest prevalence; Latin America has emerged as a region of relatively high prevalence in follow up data. The prevalence of AD seems to have reached a plateau around 20% in countries with the highest prevalence, suggesting that AD may not be on a continued rise but that a finite number of individuals may be susceptible to the condition. Risk factors associated with increased prevalence include higher socioeconomic status, higher level of family education, smaller family size and urban environment. Research indicates that food allergy and atopic sensitization to environmental allergens may not be directly causal of the condition and that a non-atopic form of the condition exists. ∼60% of patients will experience remission. The number of patients who will progress through the atopic march to develop asthma and allergic rhinitis depends on the underlying features of their condition.