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.

COVID-19 clinical trial participation and awareness in Texas.

The COVID-19 pandemic required the rapid development of COVID-19 vaccines and treatments, necessitating quick yet representative clinical trial enrollment to evaluate these preventive measures. However, misinformation around the COVID-19 pandemic and general concerns about clinical trial participation in the U.S. hindered clinical trial enrollment. This study assessed awareness of, willingness to participate in, and enrollment in COVID-19 vaccine and treatment clinical trials in Texas. A quota sample of 1,089 Texas residents was collected online from June - July 2022. Respondents were asked if they were aware of, willing to participate in, and had enrolled in clinical trials for COVID-19 vaccines or treatments. Overall, 45.8% of respondents reported being aware of clinical trials for COVID-19 treatments or vaccines, but only 21.7% knew how to enroll and only 13.2% had enrolled in a COVID-19 clinical trial. Respondents with bachelor's or graduate degrees were more likely to be aware of clinical trials, more likely to have enrolled in trials, and more willing to participate in treatment trials. Women were less willing to participate and less likely to have enrolled in COVID-19 clinical trials than men. Respondents aged 55 years and older were more willing to participate, but less likely to have enrolled in COVID-19 clinical trials than 18-to-24-year-olds. Common reasons given for not participating in clinical trials included concerns that COVID-19 treatments may not be safe, government distrust, and uncertainty about what clinical trial participation would entail. Substantial progress is needed to build community awareness and increase enrollment in clinical trials.

Leaving emergency departments without completing treatment among First Nations and non-First Nations patients in Alberta: a mixed-methods study.

BACKGROUND: Our previous research showed that, in Alberta, Canada, a higher proportion of visits to emergency departments and urgent care centres by First Nations patients ended in the patient leaving without being seen or against medical advice, compared with visits by non-First Nations patients. We sought to analyze whether these differences persisted after controlling for patient demographic and visit characteristics, and to explore reasons for leaving care. METHODS: We conducted a mixed-methods study, including a population-based retrospective cohort study for the period of April 2012 to March 2017 using provincial administrative data. We used multivariable logistic regression models to control for demographics, visit characteristics, and facility types. We evaluated models for subgroups of visits with pre-selected illnesses. We also conducted qualitative, in-person sharing circles, a focus group, and 1-on-1 telephone interviews with health directors, emergency care providers, and First Nations patients from 2019 to 2022, during which we reviewed the quantitative results of the cohort study and asked participants to comment on them. We descriptively categorized qualitative data related to reasons that First Nations patients leave care. RESULTS: Our quantitative analysis included 11 686 287 emergency department visits, of which 1 099 424 (9.4%) were by First Nations patients. Visits by First Nations patients were more likely to end with them leaving without being seen or against medical advice than those by non-First Nations patients (odds ratio 1.96, 95% confidence interval 1.94-1.98). Factors such as diagnosis, visit acuity, geography, or patient demographics other than First Nations status did not explain this finding. First Nations status was associated with greater odds of leaving without being seen or against medical advice in 9 of 10 disease categories or specific diagnoses. In our qualitative analysis, 64 participants discussed First Nations patients' experiences of racism, stereotyping, communication issues, transportation barriers, long waits, and being made to wait longer than others as reasons for leaving. INTERPRETATION: Emergency department visits by First Nations patients were more likely to end with them leaving without being seen or against medical advice than those by non-First Nations patients. As leaving early may delay needed care or interfere with continuity of care, providers and departments should work with local First Nations to develop and adopt strategies to retain First Nations patients in care.

Negative outcomes pertaining to patients that leave against medical advice: a systematic review and meta-analysis.

OBJECTIVE: Leaving Against Medical Advice (LAMA) is a prevalent issue in healthcare settings that may lead to negative patient outcomes. We conducted a systematic review and meta-analysis to assess the impact of LAMA on patient outcomes. MATERIALS AND METHODS: A comprehensive literature search was performed across PubMed, MEDLINE, Embase, Cochrane Library, CINAHL, PsycINFO, Web of Science, and Scopus. Studies reporting adverse outcomes, including mortality and hospital readmission rates, in patients who underwent LAMA were included. The odds ratios (ORs) with 95% confidence intervals (CIs) were pooled using a random-effects model. RESULTS: Eight studies were included in the review, with four contributing to the meta-analysis on 1-year mortality and five to the meta-analysis on hospital readmission rates. LAMA was not significantly associated with higher 1-year mortality [OR = 0.66, 95% CI (0.38, 1.16), p = 0.15] or hospital readmission rates [OR = 0.61, 95% CI (0.30, 1.23), p = 0.16] across the studies. However, there was substantial heterogeneity in the results (I2 = 91% for mortality; I2 = 99% for readmissions). CONCLUSIONS: While individual studies reported varying outcomes, the pooled results did not show a significant association between LAMA and increased 1-year mortality or hospital readmission rates. However, the high degree of heterogeneity suggests the influence of diverse patient populations, healthcare settings, and study methodologies on these outcomes. Further research is needed to better understand the factors contributing to the adverse outcomes associated with LAMA and to develop targeted interventions to mitigate them.

Knuckleheads.

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