Qualitative evaluation of motives for acceptance or refusal of early palliative care in patients included in early-phase clinical trials in a French comprehensive cancer center: the PALPHA study.

PURPOSE: The integration of palliative care (PC) into oncological management is recommended well before the end of life. It improves quality of life and symptom control and reduces the aggressiveness of end-of-life care. However, its appropriate timing is still debated. Entry into an early-phase clinical trial (ECT) represents hopes for the patient when standard treatments have failed. It is an opportune moment to integrate PC to preserve the patient's general health status. The objective of this study was to evaluate the motives for acceptance or refusal of early PC management in patients included in an ECT. METHODS: Patients eligible to enter an ECT were identified and concomitant PC was proposed. All patients received exploratory interviews conducted by a researcher. Their contents were analyzed in a double-blind thematic analysis with a self-determination model. RESULTS: Motives for acceptance (PC acceptors: n = 27) were both intrinsic (e.g., pain relief, psychological support, anticipation of the future) and extrinsic (e.g., trust in the medical profession, for a relative, to support the advance of research). Motives for refusal (PC refusers: n = 3) were solely intrinsic (e.g., PC associated with death, negative representation of psychological support, no need for additional care, claim of independence). CONCLUSIONS: The motives of acceptors and refusers are not internalized in the same way and call for different autonomy needs. Acceptors and refusers are influenced by opposite representations of PC and a different perception of mixed management.

A population-based propensity score matching analysis of risk factors and the impact on survival associated with refusal of cancer-directed surgery in patients with prostate cancer.

Cancer-directed surgeries (CDS) play a crucial role in prostate cancer (PCa) management along with possible survival and therapeutic benefits. However, barriers such as socioeconomic factors may affect patients' decision of refusing recommended CDS. This study aimed to uncover risk factors and the impact on survival associated with CDS refusal. We retrospectively reviewed the Surveillance, Epidemiology, and End Results database for patients diagnosed with PCa between 2000 and 2019. Multiple sociodemographic and clinical characteristics were extracted to assess predictors for physicians' surgical recommendations and patients' surgical refusal, respectively. Propensity score matching was performed to balance the covariates. The impact of surgical refusal on mortality risk was also investigated. A total of 185,540 patients were included. The physician's recommendation of CDS was significantly influenced by the patient's age, race, income, home location, diagnosis year, Gleason score, prostate-specific antigen (PSA), and TNM stage. About 5.6% PCa patients refused CDS, most of whom were older, non-White race, lack of partners, living outside of metropolitan areas, with higher PSA or lower clinical TNM stage. Patients who refused CDS had an increased risk of cancer-specific mortality and overall mortality than those who performed CDS. Physicians may weigh a host of sociodemographic and clinical factors prior to making a CDS recommendation. Patients' refusal of recommended CDS affected survival and was potentially modifiable by certain sociodemographic factors. Physicians should fully consider the hindrances behind patients' CDS refusal to improve patient-doctor shared decision-making, guide patients toward the best alternative and achieve better outcomes.

Knuckleheads.

Partnering with patients who reject our recommended treatment: how to understand what our patients are going through.

Arguments for a ban on pediatric intersex surgery: A dis/analogy with Jehovah witness blood transfusion.

This article argues for a ban on the performance of medically unnecessary genital normalizing surgeries as part of assigning a binary sex/gender to infants with intersex conditions on the basis of autonomy, regardless of etiology. It does this via a dis/analogy with the classic case in bioethics of Jehovah Witness (JW) parents' inability to refuse life-saving blood transfusions for their minor children. Both cases address ethical medical practice in situations where parents are making irreversible medical decisions on the basis of values strongly held, identity, and relationship-shaping values-such as religious beliefs or beliefs regarding the inherent value of binary sex/gender-amidst ethical pluralism. Furthermore, it takes seriously-as we must in the intersex case-that the restriction of parents' right to choose will likely result in serious harms to potentially large percentage of patients, their families, and their larger communities. I address the objection that parents' capacity to choose is restricted in the JW case on the basis of the harm principle or a duty to nonmaleficence, given that the result of parent choice would be death. I provide evidence that this is mistaken from how we treat epistemic uncertainty in the JW case and from cases in which clinicians are ethically obligated to restrict the autonomy of nonminor patients. I conclude that we restrict the parents' right to choose in the JW case-and should in the case of pediatric intersex surgery-to secure patient's future autonomy.

Outcomes of rectal cancer patients who refuse surgery after incomplete clinical response to neoadjuvant therapy.

BACKGROUND AND OBJECTIVES: Total mesorectal excision (TME) remains the standard of care for patients with rectal cancer who have an incomplete response to total neoadjuvant therapy (TNT). A minority of patients will refuse curative intent resection. The aim of this study is to examine the outcomes for these patients. METHODS: A retrospective cohort study of stage 1-3 rectal adenocarcinoma patients who underwent neoadjuvant chemoradiation therapy or TNT at a single institution. Patients either underwent TME, watch-and-wait protocol, or if they refused TME, were counseled and watched (RCW). Clinical outcomes and resource utilization were examined in each group. RESULTS: One hundred seventy-one patients (Male 59%) were included with a median surveillance of 43 months. Twenty-nine patients (17%) refused TME and had shortened overall survival (OS). Twelve patients who refused TME converted to a complete clinical response (cCR) on subsequent staging with a prolonged OS. 92% of these patients had a near cCR at initial staging endoscopy. Increased physician visits and testing was utilized in RCW and WW groups. CONCLUSION: A significant portion of patients convert to cCR and have prolonged OS. Lengthening the time to declare cCR may be considered in select patients, such as those with a near cCR at initial endoscopic staging.

Risk Factors and Survival Impact Associated With Documentation of Radiation Therapy Refusal in Patients With Gynecologic Cancer.

PURPOSE: Radiation therapy (RT) refusal is known to have deleterious effects on survival for multiple cancer types. Factors associated with RT refusal by patients with gynecologic malignancies have not been well described. This study aimed to examine factors associated with and the survival impact of documented RT refusal among patients with gynecologic cancers. METHODS AND MATERIALS: This study analyzed data from the National Cancer Database (NCDB) of patients with gynecologic cancers diagnosed between 2004 and 2020. Patients were included if they had complete survival data and a documented RT recommendation by their treating physician in the NCDB. Patients coded as received RT were compared with those coded as refused RT in the NCDB using a multivariate log binomial regression with robust variance to yield incidence rate ratios (IRR). Overall survival was analyzed using a multivariate (MV) Cox proportional hazards model to yield hazard ratios. RESULTS: This study identified 209,976 patients. A total of 5.75% (n = 12,081) patients were coded as refusing RT. Multivariable IRR showed that documentation of RT refusal was positively associated with older age (MV IRR, 1.04; 95% CI, 1.041-1.045), Native Hawaiian Pacific Islander race (1.72 [1.27-2.32]), and increased morbidity (score = 1: 1.06 [1.02-1.11]; score = 2: 1.20 [1.12-1.29]; score ≥3: 1.26 [1.14-1.38]). Negative associations were seen with Hispanic ethnicity (0.74 [0.67-0.80]), having insurance (0.58 [0.53-0.63]), and annual income >$74,063 (0.85 [0.81-0.90]). During the 16-year period, a statistically significant test for trend (P = .001) for increasing RT refusal was noted. RT refusal was associated with a significantly higher risk of death (MV hazard ratio, 1.59 [1.55-1.63]). CONCLUSIONS: For patients with gynecologic malignancies diagnosed from 2004 to 2020, an increase in documented RT refusal is associated with decreased overall survival in all disease types. Targeted interventions aimed at mitigating potential sociodemographic barriers to receipt of RT are warranted.

Investigating Deferral Rates in Cochlear Implantation: How Often Do Candidates Defer and Why?

OBJECTIVE: Evaluate the rate at which cochlear implant (CI) candidates decline surgery and identify associated factors. STUDY DESIGN: Retrospective cohort study. SETTING: Tertiary referral center. PATIENTS: Four hundred ninety-three CI candidates from July 1989 to December 2020 with complete demographic and socioeconomic data. INTERVENTIONS: Diagnostic. MAIN OUTCOME MEASURES: Age, sex, race, marital and employment status, median household income percentile, distance-to-CI-center, and residence in a medically underserved county. RESULTS: Of the 493 CI candidates included, 80 patients (16.2%) declined surgery. Based on chart checking, the most common reason patients did not receive the implant was due to loss of follow-up (38%). African American patients were 73% less likely to undergo implantation compared with White patients (odds ratio [OR], 0.27 [0.11-0.68]; p = 0.005). Asian patients were 95% less likely to undergo implantation (OR, 0.05 [0.009-0.25]; p = 0.0003) compared with White patients. For every 1-year age increase, patients were 4% less likely to undergo implantation (OR, 0.96 [0.94-0.98]; p < 0.0001) and for every 10-year age increase, the patients were 33% less likely. Compared with their single counterparts, married patients were more likely to undergo implantation (OR, 1.87 [1.12-3.15]; p = 0.02). No differences were observed when comparing implanted and nonimplanted CI candidates in sex, employment status, distance-to-CI-center, or median family income percentile. A χ2 test of independence showed no association between receiving CIs and living in medically underserved counties ( χ2 = 2; N = 493; 0.3891; p = 0.53). CONCLUSIONS: Not infrequently, CI candidates decline surgery. Although demographic factors (race, age, and marital status) were associated with the cochlear implantation decision, socioeconomic factors (median family income and residence in a medically underserved community) were not. Perhaps cultural components of a patient's race have a larger impact on whether or not the patients get implanted.

Characteristics and survival of patients with gynecological cancers who refuse radiotherapy: a retrospective cohort study.

BACKGROUND: Radiotherapy improves survival for many cancer patients. However, some patients still refuse radiotherapy despite the recommendations of their physicians. We aimed to investigate the impact of refusing recommended radiotherapy on overall survival in patients with gynecological cancers (GC) and attempted to describe what characteristics are associated with the refusal of radiotherapy. METHODS: Data were extracted from the Surveillance, Epidemiology and End Result (SEER) database for patients who were diagnosed with GC and recommended for radiotherapy between 1988 and 2016. Kaplan-Meier and multivariate Cox regression analyses were utilized to analyze the impact of refusal of radiotherapy on overall survival. Univariate and multivariate logistic regression analyses were used to identify characteristics associated with refusal of radiotherapy. RESULTS: In total, 1,226 of 208,093 patients (0.6%) refused radiotherapy. Multivariate Cox regression analysis showed that refusal of radiotherapy was associated with poorer overall survival in GC patients with stage I/II [hazard ratio (HR) = 1.64; 95% confidence interval (CI), 1.50-1.79], but may not affect overall survival in patients with stage III/IV (HR = 1.03; 95%CI, 0.84-1.25). Multivariate logistic regression analysis demonstrated that factors such as older age (40-65 years, > 65 years), unmarried status (divorced, single, widowed), higher foreign-born rate (1.87-2.82%, 1.51-2.19), refusal of surgery (recommended but not performed), and higher grade (poorly differentiated, undifferentiated/anaplastic) may increase the likelihood of refusing radiotherapy (all P < 0.05). Factors that may reduce the likelihood of refusing radiotherapy include higher income (> 42,810$), lower grade (well-differentiated), primary site of ovarian cancer, and no/unknown chemotherapy (all P < 0.05). CONCLUSION: Refusal of radiotherapy is related to worse overall survival in GC patients with stage I/II, and many characteristics may affect a patient's choice of refusal of radiotherapy.

Persistent racial disparities in refusal of resection in non-small cell lung cancer patients at high-volume and Black-serving institutions.

BACKGROUND: Surgical resection is the standard of care for early-stage non-small cell lung cancer. Black patients have higher surgical refusal rates than White patients. We evaluated factors associated with the refusal of resection and subsequent non-small cell lung cancer outcomes. METHODS: We identified patients with non-small cell lung cancer stages IA to IIIA eligible for surgical resection (lobectomy or pneumonectomy) listed between 2004 and 2017 in the National Cancer Database. We stratified hospitals by the proportion of Black patients served and lung cancer resection volume. We used multivariable regression models to identify factors associated with refusal of resection and assessed 5-year mortality using Kaplan-Meier analysis and Cox proportional hazard modeling. RESULTS: Of 221,396 patients identified, 7,753 (3.5%) refused surgery. Black race was associated with increased refusal (adjusted odds ratio 2.06, 95% confidence interval 1.90-2.22). Compared to White race, Black race was associated with increased refusal across the highest (adjusted odds ratio 2.29, 95% confidence interval 1.94-2.54), intermediate (adjusted odds ratio 2.05, 95% confidence interval 1.78-2.37), and lowest (adjusted odds ratio 1.77, 95% confidence interval 1.58-1.99) volume tertiles. Similarly, Black race was associated with increased refusal across the highest (adjusted odds ratio 1.97, 95% confidence interval 1.78-2.17), intermediate (adjusted odds ratio 2.08, 95% confidence interval 1.80-2.40), and lowest (adjusted odds ratio 1.53, 95% confidence interval 1.13-2.06) Black-serving tertiles. However, surgical resection yielded similar 5-year survival for Black and White patients. CONCLUSION: Racial disparities in non-small cell lung cancer surgery refusal persist regardless of hospital volume or proportion of Black patients served. These findings suggest that a better understanding of patient and patient-provider level interventions could facilitate a better understanding of treatment decision-making.

Medical Mistrust Mediates the Relationship Between Nonconsensual Intersex Surgery and Healthcare Avoidance Among Intersex Adults.

BACKGROUND: Intersex individuals experience poor health due, in part, to healthcare avoidance. Nonconsensual intersex surgery may contribute to medical mistrust and avoidance among intersex populations. PURPOSE: The purpose of this study was to explore the relationship between nonconsensual surgery and healthcare avoidance among intersex populations and to examine if medical mistrust mediates this relationship. METHODS: Data for this cross-sectional study were collected in 2018 and analyzed in 2022. Participants completed a survey collecting information on demographics, medical mistrust, history of nonconsensual surgery, and history of postponing healthcare. One hundred nine participants with valid responses to all regression model variables were included in the study. Multivariable logistic regression models controlling for age, race, and income, examined the relationship between nonconsensual surgery and postponing preventive and emergency healthcare. Mediation analyses of cross-sectional data examined whether medical mistrust mediated the relationship between nonconsensual surgery and postponing preventive and emergency healthcare. RESULTS: Mean medical mistrust score was 2.8 (range = 1-4; standard deviation = 0.8), 49.7% of participants had nonconsensual surgery in their lifetime, 45.9% postponed emergency healthcare, and 61.5% postponed preventive healthcare in their lifetime. Nonconsensual surgery was associated with increased odds of delaying preventive (adjusted odds ratio [AOR] = 4.17; confidence interval [CI] = 1.76-9.88; p = .016) and emergency healthcare (AOR = 4.26; CI = 1.71-10.59; p = .002). Medical mistrust mediated the relationship between nonconsensual surgery and delaying preventive (indirect effect = 1.78; CI = 1.16-3.67) and emergency healthcare (indirect effect = 1.66; CI = 1.04-3.30). CONCLUSIONS: Nonconsensual surgery contributed to healthcare avoidance in this intersex population by increasing medical mistrust. To decrease healthcare avoidance, intersex health promotion interventions should restrict nonconsensual surgery and build trust through trauma-informed care.

Many intersex people experience nonconsensual surgery during childhood to alter their genitalia and other anatomy. Some intersex people who have experienced nonconsensual surgery develop subsequent mistrust in medical providers and avoidance of healthcare. The purpose of this study was to understand the relationship between nonconsensual surgery and delay in emergency and preventive healthcare among intersex adults. Additionally, this study aimed to understand whether mistrust in medical providers mediates the relationship between nonconsensual surgery and delaying emergency and preventive healthcare. This study found that ever having nonconsensual surgery was positively associated with delaying both emergency and preventive healthcare among intersex adults. Additionally, this study found that increased mistrust in medical providers mediated the relationship between nonconsensual surgery and delaying emergency and preventive healthcare. Interventions aimed at improving the healthcare engagement of intersex adults may focus on building trust between intersex patients and healthcare providers and restricting nonconsensual intersex surgeries.

Overcoming refusal of treatment in pediatric cancer without legal involvement: A descriptive case series from interviews with pediatric oncologists.

To describe strategies that pediatric oncologists utilize to persuade families to initiate or continue chemotherapy after refusing treatment, we examined transcripts from interviews of oncologists with relevant experience. We identified three cases in which the pediatric oncologists' approaches led to voluntary acceptance of recommended treatment without legal intervention. Strategies used include direct communication with alternative medicine providers, time-limited trial of alternative therapy, and praying with the family. While we cannot conclude whether these approaches could be generalized to other cases, they offer ideas for pediatric oncologists to consider when facing the decision to seek judicial involvement or discontinue persuasive efforts.

County characteristics associated with refusing breast cancer surgery: Evidence from the Surveillance, Epidemiology, and End Results program.

BACKGROUND: Individuals' communities impact cancer disparities and are intimately related to social determinants of health. Studies show that personal factors affect treatment refusals for a potentially curable cancer, but few studies have investigated whether community-based characteristics affect the receipt of surgery. METHODS: We used Surveillance Epidemiology and End Results Program registries from 2010 to 2015 to examine differences in rates of surgery refusal among non-Hispanic White, non-Hispanic Black, and Hispanic women diagnosed with nonmetastatic breast cancer. The community factor measures were based on county-level factors. Sociodemographic and community differences were analyzed using Pearson's χ2 tests and analysis of variance. Multivariate logistic regression of predictors of surgery refusal and the Cox proportional hazard model of disease-specific mortality were performed. RESULTS: Surgery refusers among non-Hispanic Black and Hispanic all races lived in counties with lower rates of educational attainment, median family and household income, and higher rates of poverty, unemployment, foreign-born, language isolation, urban population, and women more than 40 years old having mammography in last 2 years. Multivariate analysis shows surgery refusal rates increased in counties having a high percentage of urban population and declined in counties with an increased percentage of less than high school level education, unemployment, and median household income. Breast cancer-specific mortality increased significantly with surgery refusal. CONCLUSION: Residence in counties with the lowest socioeconomic status and disproportionately populated by racial and ethnic minorities is associated with surgery refusal. Given the high mortality associated with refusing surgery, culturally sensitive education on the benefits of care may be appropriate.

Harmful impact of treatment refusal in T3-4M0 endolaryngeal squamous cell carcinoma candidates for total laryngectomy: A STROBE analysis.

PURPOSE: To evaluate the consequences of treatment refusal in total laryngectomy (TL) candidates with T3-4M0 endolaryngeal squamous cell carcinoma (SCC). MATERIALS AND METHODS: A retrospective observational study was conducted in an inception cohort of 576 isolated T3-4M0 endolaryngeal SCC candidates for TL consecutively managed between 1970 and 2019 in a French university teaching hospital. The main endpoint was survival time and cause of death in 2 groups. Group A, 4.5% of the cohort, consisted of 26 patients who declined any laryngeal treatment. Group B consisted of 550 patients who accepted TL. Accessory endpoints were causes of TL refusal and associated variables. The STROBE guideline was applied. The significance threshold was set at P<0.005. RESULTS: One-and 3-year actuarial survival estimates increased significantly (P<0.0001) from 39% and 15% in group A, to 83% and 63% in group B, respectively. In group A, 92% of causes of death implicated index SCC progression, whereas in group B intercurrent disease, metachronous second primary, locoregional and/or metastatic SCC progression and postoperative complications accounted for 37%, 31%, 29%, and 2%, respectively. The actuarial survival estimates within group A increased significantly (P=0.0003) from 0% at 1-year in patients managed with isolated supportive care to 56% in patients managed with chemotherapy (reaching 0% at 5years). Reasons for TL refusal were fear of surgery, refusal of tracheostoma, loss of physiologic phonation, and certain comorbidities. Age and chronologic period correlated significantly with TL refusal. Median age decreased (P<0.001) from 69years in group A to 58 years in group B. Percentage TL refusal increased (P<0.0001) from 2% to 11% before and after start 1990, respectively. CONCLUSION: The current study determined loss of survival with refusal of any laryngeal treatment including TL, noted benefit of chemotherapy associated to supportive care, and discussed the possible contribution of immunotherapy.

Patient and provider factors predict non-surgical management for complex upper gastrointestinal cancers.

BACKGROUND: Surgery is the only potentially curative treatment for non-metastatic upper gastrointestinal cancers. We analyzed patient and provider characteristics associated with non-surgical management. METHODS: We queried the National Cancer Database for patients with upper gastrointestinal cancers from 2004 to 2018 who underwent surgery, refused surgery, or for whom surgery was contraindicated. Multivariate logistic regression identified factors associated with surgery being refused or contraindicated, and Kaplan-Meier curves assessed survival. RESULTS: We identified 249,813 patients based on our selection criteria-86.3% had surgery, 2.4% refused, and for 11.3%, surgery was contraindicated. Median overall survival was 48.2 months for patients who underwent surgery versus 16.3 and 9.4 months for the refusal and contraindicated groups. Medical and non-medical factors predicted both surgery refusals and contraindications, such as increasing age (odds ratio = 1.07 and 1.03, respectively, P < .001), Black race (odds ratio = 1.72 and 1.45, P < .001), comorbidities (Charlson-Deyo score 2+, odds ratio = 1.18 and 1.66, P < .001), low socioeconomic status (odds ratio = 1.70 and 1.40, P < .001), no health insurance (odds ratio = 3.26 and 2.34, P < .001), community cancer programs (odds ratio = 1.43 and 1.40, P < .001), low volume facilities (odds ratio = 1.82 and 1.52, P < .001), and stage 3 disease (odds ratio = 1.51 and 6.50, P < .001). On subset analysis (excluding patients age >70, Charlson-Deyo score 2+, and stage 3 cancer), non-medical predictors of both outcomes were similar. CONCLUSION: Refusal of and medical contraindications for surgery profoundly impact overall survival. The same factors (ie, race, socioeconomic status, hospital volume, and hospital type) predict these outcomes. These findings suggest variation and potential bias that may exist between physicians and patients discussing cancer surgery.

Disparities in refusal of surgery for gynecologic cancer.

OBJECTIVE: To identify sociodemographic and clinical factors associated with refusal of gynecologic cancer surgery and to estimate its effect on overall survival. METHODS: The National Cancer Database was surveyed for patients with uterine, cervical or ovarian/fallopian tube/primary peritoneal cancer treated between 2004 and 2017. Univariate and multivariate logistic regression were used to assess associations between clinico-demographic variables and refusal of surgery. Overall survival was estimated using the Kaplan-Meier method. Trends in refusal over time were evaluated using joinpoint regression. RESULTS: Of 788,164 women included in our analysis, 5875 (0.75%) patients refused surgery recommended by their treating oncologist. Patients who refused surgery were older at diagnosis (72.4 vs 60.3 years, p < 0.001) and more likely Black (OR 1.77 95% CI 1.62-1.92). Refusal of surgery was associated with uninsured status (OR 2.94 95% CI 2.49-3.46), Medicaid coverage (OR 2.79 95% CI 2.46-3.18), low regional high school graduation (OR 1.18 95% CI 1.05-1.33) and treatment at a community hospital (OR 1.59 95% CI 1.42-1.78). Patients who refused surgery had lower median overall survival (1.0 vs 14.0 years, p < 0.01) and this difference persisted across disease sites. Between 2008 and 2017, there was a significant increase in refusal of surgery annually (annual percent change +1.41%, p < 0.05). CONCLUSIONS: Multiple social determinants of health are independently associated with refusal of surgery for gynecologic cancer. Given that patients who refuse surgery are more likely from vulnerable, underserved populations and have inferior survival, refusal of surgery should be considered a surgical healthcare disparity and tackled as such.

[The psychological factors of renunciation of antitumoral therapy by women with breast cancer (international publications review)].

The article presents analytical review of studies considering problem of patient refusal from antitumoral treatment, in particular of women with breast cancer. The analysis of main results of empirical studies describes factors associated with patient refusal from treatment. Among factors affecting decision making related to patient voluntarily refuse of treatment are toxicity of treatment (nausea and vomiting), senile age, disease stage, availability and type of medical insurance, characteristics of family status. Besides objective factors, such subjective factors as beliefs, values ​​of patients are described. The deficiency of research studies concerning psychological factors of patient refusal of antitumoral treatment is established. However, patient loyalty to antitumoral treatment plays decisive role in prognosis of survival and favorable course of disease. In connection with that, studies covering such areas as psychological characteristics of personality of patients refusing of antitumoral treatment, verification of psychological factors of this voluntary refusal are required in order to organize continuum of oncological care of patients, their psychological maintenance and increasing of commitment to treatment.

A National Cancer Disparities Analysis of Predictors for Radiation Therapy Refusal by Race.

PURPOSE: Radiation therapy (RT) refusal by patients with cancer is infrequent but is significant because it portends poor outcomes. No prior study has evaluated all five federally defined racial categories with respects to RT refusal. Here we use a large nationally representative population with cancer to determine: 1) which race of patients refuse RT the most and 2) predictive factors for RT refusal by race. MATERIALS/METHODS: A retrospective study included patients ≥18 years old with diagnostically confirmed cancer between 2004-2017, using the National Cancer Database. All patients included were offered RT for first course treatment. Multivariable logistic regression assessed RT refusal (adjusted odds ratio [aOR]) with 95% confidence intervals (95%CI). Analyses were adjusted for patient factors (age, rurality, income, education, and comorbidities) and cancer characteristics (stage, cancer type, facility type, year of diagnosis, and region). Median overall survival was calculated using the Kaplan-Meier method. RESULTS: Of 11,609,044 patients, 2,759,753 patients were included and recommended for RT by the treating physician. Median follow-up was 50 months. RT was refused by 139,383 patients (5.0%), varying by race: 416 NHPI (7.2%), 489 AIAN (5.8%), 118,186 Non-Hispanic White (5.0%), 17,427 Black (4.8%), and 2,865 Asian (4.8%) patients. The rates of annual RT refusal were increasing, especially among NHPI patients. The populations with the highest likelihood of refusing RT were NHPI (aOR=1.53, 95%CI=1.36-1.71), AIAN (aOR=1.24, 95%CI=1.12-1.37), and Black (aOR=1.11, 95%CI=1.09-1.14) patients, compared to Non-Hispanic White patients. Older age and higher comorbidity burden predicted RT refusal across all races. Median overall survival was 81 months and 144 months for patients who refused RT and received RT, respectively. CONCLUSIONS: Indigenous and Black patients are more likely to refuse RT, which may contribute to inferior cancer outcomes. Understanding NHPI and AIAN patient perspectives and perceptions may elucidate interventions to mitigate these disparities.

Risk factors associated with abandonment of care in retinoblastoma: analysis of 692 patients from 10 countries.

BACKGROUND: Rates of care abandonment for retinoblastoma (RB) demonstrate significant geographical variation; however, other variables that place a patient at risk of abandoning care remain unclear. This study aims to identify the risk factors for care abandonment across a multinational set of patients. METHODS: A prospective, observational study of 692 patients from 11 RB centres in 10 countries was conducted from 1 January 2019 to 31 December 2019. Multivariate logistic regression was used to identify risk factors associated with higher rates of care abandonment. RESULTS: Logistic regression showed a higher risk of abandoning care based on country (high-risk countries include Bangladesh (OR=18.1), Pakistan (OR=45.5) and Peru (OR=9.23), p<0.001), female sex (OR=2.39, p=0.013) and advanced clinical stage (OR=4.22, p<0.001). Enucleation as primary treatment was not associated with a higher risk of care abandonment (OR=0.59, p=0.206). CONCLUSION: Country, advanced disease and female sex were all associated with higher rates of abandonment. In this analysis, enucleation as the primary treatment was not associated with abandonment. Further research investigating cultural barriers can enable the building of targeted retention strategies unique to each country.

Parental Refusals of Blood Transfusions from COVID-19 Vaccinated Donors for Children Needing Cardiac Surgery.

There is a growing trend of refusal of blood transfusions from COVID-19 vaccinated donors. We highlight three cases where parents have refused blood transfusions from COVID-19 vaccinated donors on behalf of their children in the setting of congenital cardiac surgery. These families have also requested accommodations such as explicit identification of blood from COVID-19 vaccinated donors, directed donation from a COVID-19 unvaccinated family member, or use of a non-standard blood supplier. We address the ethical challenges posed by these issues. We describe the current screening and safety processes for standard blood donation and explore the importance of donor anonymity and challenges with directed donation and non-standard blood suppliers. We present an ethical framework using the Best Interest Standard, the Zone of Parental Discretion, and the Harm Principle when considering these refusals. Finally, we provide recommendations for how to approach these requests as they potentially become more commonplace in pediatrics.