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.

"Current", "heated rods", and "hot vapour": why patients refuse radiotherapy as a treatment modality for cancer in northern Sri Lanka.

PURPOSE: Significant proportions of patients either refuse or discontinue radiotherapy, even in the curative setting, leading to poor clinical outcomes. This study explores patient perceptions that underlie decisions to refuse/discontinue radiotherapy at a cancer care facility in northern Sri Lanka. METHODS: An exploratory descriptive qualitative study was carried out among 14 purposively selected patients with cancer who refused/discontinued radiotherapy. In-depth semi-structured interviews were transcribed in Tamil, translated into English, coded, and thematically analyzed. RESULTS: All participants referred to radiotherapy as "current" with several understanding the procedure to involve electricity, heat, or hot vapour. Many pointed to gaps in information provided by healthcare providers, who were perceived to focus on side effects without explaining the procedure. In the absence of these crucial details, patients relied on family members and acquaintances for information, often based on second or third-hand accounts of experiences with radiotherapy. Many felt pressured by family to refuse radiation, feared radiation, or felt ashamed to ask questions, while for others COVID-19 was an impediment. All but three participants regretted their decision, claiming they would recommend radiation to patients with cancer, especially when it is offered with curative intent. CONCLUSION: Patients with cancer who refused/discontinued radiation therapy have significant information needs. While human resource deficits need to be addressed in low-resource settings like northern Sri Lanka, providing better supportive cancer care could improve clinical outcomes and save healthcare resources that would otherwise be wasted on patient preparation for radiotherapy.

Identifying Risk Factors for AMA Discharge After Injury at a Level 1 Trauma Center.

BACKGROUND: Discharging a patient against medical advice (AMA) is used to describe when a patient opts to leave the hospital prior to a physician's recommendation while acknowledging the risks of doing so. There are limited published data that identify risk factors for patients leaving AMA, particularly after trauma. OBJECTIVE: This study sought to delineate risk factors for AMA discharge after trauma. METHODS: Trauma patients who left AMA at our ACS-verified level 1 trauma center were retrospectively included (2021-2022) without exclusions. Demographics, clinical/injury data, and outcomes were collected. The primary outcome was patient-stated reason for leaving AMA. Study variables were summarized with descriptive statistics. RESULTS: During the study period, 262 (8%) of 3218 admitted trauma patients left AMA. Psychiatric disease was present in most patients (n = 197, 75%), including substance abuse (n = 146, 56%), and alcohol abuse (n = 95, 36%). Common patient-stated reasons for leaving AMA were inability/unwillingness to wait for procedure, imaging, or placement (n = 56, 22%); and psychiatric disease other than alcohol/substance abuse (n = 39, 15%). Of the patients who left AMA, 29% (n = 77) returned to the hospital 30 days, and 13% (n = 35) were readmitted. CONCLUSION: Patients who leave AMA are at elevated risk of returning to the hospital, which incurs additional costs in already resource-constrained systems. These findings provide impetus for early identification of high-risk patients and efforts to decrease wait times for imaging, procedures, and placement. These actions may mitigate AMA discharges and their resultant impact on patients and hospitals.

Propriedades psicométricas da versão brasileira do Questionário de Ambivalência em Psicoterapia - QAP / Psychometric properties of the brazilian version of the Ambivalence in Psychotherapy Questionnaire (APQ) / Propiedades psicométricas de la versión brasileña del Cuestionario de Ambivalencia en Psicoterapia - QAP

Níveis elevados de ambivalência estão associados a piores resultados e abandono terapêutico. Este estudo teve como objetivo a adaptação transcultural e avaliação das propriedades psicométricas do Questionário de Ambivalência em Psicoterapia (QAP). Após adaptação cultural do instrumento, foram avaliados 181 indivíduos em psicoterapia de diversas abordagens, em clínicas-escola e consultórios particulares. O QAP foi avaliado quanto à estrutura interna e relação com variáveis externas. Na análise fatorial confirmatória, o modelo com melhor ajuste foi composto por três dimensões: duas de primeira ordem - Desmoralização e Alternância - e uma de segunda ordem - Ambivalência. A consistência interna foi 0,86. Na relação com variáveis externas, o QAP se correlacionou moderadamente com medidas de desconforto psicológico (OQ-45- Outcome Questionnaire) (r = 0,65) e motivação para mudança (URICA - University of Rhode Island Change Assessment): contemplação (r = 0,36) e manutenção (r = 0,37). A versão brasileira do QAP demonstrou ser um instrumento com boas características psicométricas, de aplicação rápida e fácil. (AU)

High levels of ambivalence are associated with poor outcomes and therapeutic abandonment. The objective of this study was to conduct a cross-cultural adaptation and assessment of the psychometric properties of the Ambivalence in Psychotherapy Questionnaire (APQ). After cultural adaptation of the instrument, we assessed 181 individuals undergoing psychotherapy of different approaches in school clinics and private practices. The APQ was validated regarding internal structure and relationship with external variables. In the confirmatory factor analysis, the model with the best fit was composed of three dimensions: two first-order - Demoralization and Wavering - and one second-order - Ambivalence. The internal consistency was 0.86. In relation to external variables, the APQ correlated moderately with measures of psychological distress (OQ-45- Outcome Questionnaire) (r = 0.65) and motivation to change (URICA- University of Rhode Island Change Assessment): contemplation (r = 0.36) and maintenance (r = 0.37). The results indicated that the Brazilian version of the APQ is a suitable instrument, of quick and easy application. (AU)

Los altos niveles de ambivalencia se asocian con peores resultados y abandono terapéutico. Este estudio tuvo como objetivo la adaptación transcultural y la evaluación de las propiedades psicométricas del Cuestionario de Ambivalencia en Psicoterapia (QAP). Después de la adaptación cultural del instrumento, 181 individuos fueron evaluados en psicoterapia utilizando diferentes enfoques, en clínicas-escuelas y consultorios privados. El QAP fue evaluado por su estructura interna y su relación con variables externas. En el análisis factorial confirmatorio, el modelo con mejor ajuste estuvo compuesto por tres dimensiones: dos de primer orden - Desmoralización y Alternancia - y una de segundo orden - Ambivalencia. La consistencia interna fue de 0,86. En relación con las variables externas, el QAP se correlacionó moderadamente con las medidas de malestar psicológico (OQ-45- Outcome Questionnaire) (r = 0,65) y motivación para el cambio (URICA- University of Rhode Island Change Assessment): contemplación (r = 0,36) y mantenimiento (r = 0,37). La versión brasileña del QAP demostró ser un instrumento con buenas características psicométricas, de rápida y fácil aplicación. (AU)

Why do French women refuse to have Down's syndrome screening by maternal serum testing? A mixed methods study.

PURPOSE: The study aims to analyse the reasons underpinning women's refusal to undertake Down's syndrome screening (DSS) by maternal serum testing (MST). METHODS: A retrospective, mixed methods sequential approach was used. An online survey on women's experience of prenatal testing followed by in-depth interviews were conducted, with women over 18 years old, who had been pregnant within five years prior to the study. Altogether, 1726 responses were gathered, of which 217 related to women who had refused MST. The study compares the women who refused MST with women who accepted it on sociodemographic characteristics, the evolution and experience of the pregnancy, their knowledge about Down's syndrome (DS). It also utilises survey comments and five in-depth interviews to explore, using Thematic Analysis, the reasons for refusing MST. RESULTS: To refuse MST is cognitively demanding. Indeed, women who refused MST were better educated, knew more about prenatal diagnosis sequences and DS than women who accepted it. This position is also emotionally challenging as women's interactions with practitioners can put them in difficult situations, where they have to defend their point of view. Reasons for refusing MST go beyond religious beliefs, negative attitudes towards abortion and/or medicalisation of pregnancy. Rather, women's position appears to be driven by a holistic conception of care-based monitoring, values of inclusivity and a desire to remain in control of their pregnancy. CONCLUSIONS: It is essential that women feel accepted and supported in their choice to refuse MST. Consequently, it is important for professionals to remain cognisant of the diversity of factors underpinning women's decision, the pressure this position generates and the challenges that come with it.

Understanding "Patient refuses" among 90+ year old patients with cancer or presumed cancer.

OBJECTIVES: Patients who are 90+ years of age are a growing - but understudied - group at risk for cancer. Because many of these patients are undertreated (with no tissue/cytologic diagnosis), we sought to better understand how such decisions are arrived upon. METHODS: This study focused on patients between 2007 and 2017. None had received cancer therapy. Medical records were reviewed for quotations relevant to decision-making and analyzed qualitatively. RESULTS: Ninety-four patients (median age 93 years) with a cancer diagnosis/presumed diagnosis were identified; most were women (82%) with an average of six co-morbidities (dementia occurred in approximately one-third). The primary qualitative theme was a keen appreciation on the part of all stakeholders of the gravity of the decision to forgo a cancer work-up/therapy, with four subthemes: 1) substantial, detailed medical information about the patient's medical condition ("600 mL of yellow, hazy fluid with an LDH [lactate dehydrogenase] level greater than 450 …"); 2) complex discussions about the risks and benefits of no biopsy and/or no cancer treatment ("[the patient] would not prefer to have the quality of any remaining time ruined with salvage chemo and radiation"); 3) the inclusion of multiple individuals in decision-making ("I had a lengthy discussion with the patient and her daughter;" "I spoke by phone with one of my pathology colleagues"); and 4) patient-voiced decision-making ("I want to die."). CONCLUSION: Healthcare providers appear to understand the seriousness of no cancer-directed therapy and no work-up in patients 90 years of age and older. Neither ageism nor nihilism was observed.

Rate and associated factors of refusal to perform immunochemical Faecal Occult Blood Test (iFOBT) among semi-urban communities.

The uptake of the immunochemical faecal occult blood test (iFOBT) in many countries with an opportunistic colorectal cancer (CRC) screening programme remains suboptimal. This study aimed to determine the rate, associated factors and reasons of refusal to perform the iFOBT test offered under an opportunistic CRC screening programme in semi-urban communities. This cross-sectional study was conducted among the average-risk individuals living in semi-urban areas, who sought care from public primary care centres across Kedah state, Malaysia. The information regarding the sociodemographic and clinical characteristics of individuals who were offered the iFOBT between January and April 2019, along with their willingness to perform the test, was gathered. The factors associated with the refusal were further explored using the logistic regression analysis. The individuals offered the iFOBT (n = 920) were mainly female (52.4%) and had a mean age of 58.7±10.6 years. The refusal rate of the iFOBT was 32.2%. Patients who did not have hypertension (adjusted OR: 3.33; 95% CI: 2.44, 4.54), did not have CRC symptoms (adjusted OR: 3.15; 95% CI:1.26, 7.89), had the test offered by either medical assistants (adjusted OR: 2.44; 95% CI: 1.71, 3.49) or nurses (adjusted OR: 2.41; 95% CI 1.65, 3.51), did not have diabetes (adjusted OR: 1.99; 95% CI: 1.42, 2.77),and were not active smokers (adjusted OR: 1.74; 95% CI: 1.22, 2.47), were more likely to refuse the iFOBT. The common reasons of refusing the test included "feeling not ready for the test" (21.6%) and "feeling healthy" (14.9%). The iFOBT was refused by one-third of the average-risk individuals from semi-urban communities. The associated factors and reasons of refusal found in this study could guide policymakers in developing targeted interventions to boost the uptake of CRC screening in Malaysia.

Assessment of Communication Strategies for Mitigating COVID-19 Vaccine-Specific Hesitancy in Canada.

Importance: Ensuring widespread uptake of available COVID-19 vaccinations, each with different safety and efficacy profiles, is essential to combating the unfolding pandemic. Objective: To test communication interventions that may encourage the uptake of less-preferred vaccines. Design, Setting, and Participants: This online survey was conducted from March 24 to 30, 2021, using a nonprobability convenience sample of Canadian citizens aged 18 years or older, with quota sampling to match 2016 Canadian Census benchmarks on age, gender, region, and language. Respondents completed a 2-by-2-by-2 factorial experiment with random assignment of brand (AstraZeneca or Johnson & Johnson), information about the vaccine's effectiveness against symptomatic infection (yes or no), and information about the vaccine's effectiveness at preventing death from COVID-19 (yes or no) before being asked about their willingness to receive their assigned vaccine and their beliefs about its effectiveness. Exposures: Respondents were randomly assigned a vaccine brand (AstraZeneca or Johnson & Johnson) and information about the vaccine's effectiveness against symptomatic COVID-19 infection (yes or no) and at preventing death from COVID-19 (yes or no). Main Outcomes and Measures: Respondents' self-reported likelihood of taking their assigned vaccine if offered (response categories: very likely, somewhat likely, not very likely, or not at all likely, scaled 0-1) and their beliefs about their assigned vaccine's effectiveness (response categories: very effective, somewhat effective, not very effective, or not at all effective, scaled 0-1) were measured. Results: A total of 2556 Canadian adults responded to the survey (median [IQR] age, 50 [34-63] years; 1339 women [52%]). The self-reported likelihood of taking an assigned AstraZeneca or Johnson & Johnson vaccine was higher for respondents given information about their assigned vaccine's effectiveness at preventing death from COVID-19 (b, 0.04; 95% CI, 0.01 to 0.06) and lower among those given information about its overall effectiveness at preventing symptomatic transmission (b, -0.03; 95% CI, -0.05 to 0.00), compared with those who were not given the information. Perceived effectiveness was also higher among those given information about their assigned vaccine's effectiveness at preventing death from COVID-19 (b, 0.03; 95% CI, 0.01 to 0.05) and lower among those given information about their assigned vaccine's overall efficacy at preventing symptomatic infection (b, -0.05; 95% CI, -0.08 to -0.03), compared with those who were not given this information. The interaction between these treatments was neither substantively nor statistically significant. Conclusions and Relevance: These findings suggest that providing information on the effectiveness of less-preferred vaccines at preventing death from COVID-19 is associated with more confidence in their effectiveness and less vaccine-specific hesitancy. These results can inform public health communication strategies to reduce hesitancy toward specific COVID-19 vaccines.

[Steinert's disease and refusal to treatment]. / Enfermedad de Steinert y rechazo de la actuación médica.

TITLE: Enfermedad de Steinert y rechazo de la actuación médica.

Against Medical Advice Discharge: A Narrative Review and Recommendations for a Systematic Approach.

Approximately 1%-2% of hospitalizations in the United States result in an against medical advice discharge. Still, the practice of discharging patients against medical advice is highly subjective and variable. Discharges against medical advice are associated with physician distress, patient stigma, and adverse outcomes, including increased morbidity and mortality. This review summarizes discharge against medical advice research, proposes a definition for against medical advice discharge, and recommends a standard approach to a patient's request for discharge against medical advice.

Effects of an actual insulin injection demonstration on insulin acceptance among patients with T2DM: a pragmatic randomized controlled trial.

Introduction. Insulin injection refusal is a challenge when initiating insulin therapy. This study aimed to investigate the effects of an actual insulin injection demonstration on insulin acceptance in patients with type 2 diabetes mellitus (T2DM).Methods. A pragmatic randomised controlled trial (RCT) was conducted. The participants were patients with T2DM aged 18-65 years old. The control group (CG) received an educational programme regarding T2DM. The intervention group (IG) received the educational programme and actual insulin injection demonstration (a physician-led sample insulin injection using an insulin pen). The main outcome was immediate insulin acceptance. Insulin adherence, glycated haemoglobin (HbA1c), and adverse effects of insulin were evaluated at three months after the intervention.Results. Forty-nine participants with T2DM were allocated to the IG (n = 24) and the CG (n = 25). The immediate insulin acceptance was significantly higher in the IG (79.17%, n = 19) than the CG (24.00%, n = 6; p < 0.05; RR 3.30, 95% CI 1.59 to 6.82). At the three-month follow-up, the insulin adherence was significantly different between the two groups (IG: 75.00%, n = 18 vs CG: 20.00%, n = 5; p < 0.05; RR 3.75, 95% CI 1.66 to 8.49). Adverse effects of insulin, HbA1c levels, and changes in HbA1c levels between the IG and CG were not different.Conclusion. The physician-led actual insulin injection demonstration is effective for increasing insulin acceptance among participants with T2DM.

Multi-Level Predictors of Discharges Against Medical Advice: Identifying Contributors to Variation Using an All-Payer Database.

ABSTRACT: There is increasing evidence of the role of non-patient-level factors on discharge against medical advice (DAMA), but limited quantitative information regarding the extent of their impact. This study quantifies the contribution of discharge-level and hospital-level factors to the variation in DAMA. We grouped variables from the 2014 National Inpatient Sample data and ran incremental mixed-effects logit models with grouping at the level of the discharge, the hospital, and the census region. We obtained the intraclass correlation coefficients (ICCs), and evaluated the incremental change in ICC. The final sample included 2,687,430 discharges. 12.8% of the identified variation in the probability of DAMA was associated with the hospital, and 1.2% of the variation was associated with the census division in which the hospital was located. The final, fully-adjusted model had 7.3% of variation in DAMA associated with the hospital-level, with the greatest percentage reductions because of the addition of patient demographics. Even after adjusting for measured patient-level characteristics, there was a contribution of non-patient-level factors to DAMA outcomes. The findings identify a role for a multi-level approach to addressing DAMA.

Chronic Pancreatitis Patients Who Leave Against Medical Advice: Prevalence, Trend, and Predictors.

BACKGROUND AND AIMS: Leaving against medical advice (LAMA) is an unfortunate occurrence in 1-2% of all hospitalized patients and is associated with worse outcomes. While this has been investigated across multiple clinical conditions, studies on patients with chronic pancreatitis (CP) are lacking. We aimed to determine the prevalence and determinants of this event among patients with CP. METHODS: The Healthcare Cost and Utilization Project-Nationwide Inpatient Sample (NIS), 2007-2014, was used in the study. Patients with LAMA were identified, and the temporal trend of LAMA was estimated and compared among patients with and without CP. We then extracted patients with a discharge diagnosis of CP from the recent years of HCUP-NIS (2012-2014) and described the characteristics of LAMA in these patients. Multivariate logistic regression models were used to evaluate predictors of LAMA. RESULTS: 3.39% of patients with CP discharged against medical advice. LAMA rate in CP patients was higher and increased more steeply at quadruple the rate of those without. More likely to self-discharge were patients who were young, males, non-privately insured, or engaged in alcohol and substance abuse, likewise were those with psychosis and those admitted on a weekend or non-electively. The northeast and for-profit hospitals also had higher odds of LAMA. However, patients transferred from other healthcare facilities have reduced LAMA odds. Among all patients with CP, those with LAMA had shorter length of stay (2.74 [2.62-2.85] days vs. 5.78 [5.71-5.83] days) and lower hospitalization cost $23,271 [$22,171-$24,370] versus $45,472 [$44,381-$46,562] compared to the no-LAMA group. CONCLUSION: LAMA occurs in approximately 1 in 29 patients with CP and is increasing at almost quadruple the rate of those without. Clinicians need to pay closer attention to the identified at-risk groups for ameliorative targeted interventions.

A Substance Misuse Intervention Program in Postacute Care: Who Declines Participation?

OBJECTIVES: Alcohol and substance misuse has been under-acknowledged and underidentified in older adults. However, promising treatment approaches exist (e.g., brief interventions) that can support older adults with at-risk alcohol and substance use. Postacute rehabilitation settings of Skilled Nursing Facilities (SNFs) can offer such programs, but little is known about patient characteristics that are associated with the likelihood of participating in interventions offered in postacute rehabilitation care. Thus, the objective of this study was to identify individual patient characteristics (predisposing, enabling, and need-related factors) associated with participation in a brief alcohol and substance misuse intervention at a SNF. METHODS: This cross-sectional study analyzed medical record data of postacute care patients within a SNF referred to a substance misuse intervention. Participants were 271 patients with a history of substance misuse, 177 of whom enrolled in the intervention and 94 refused. Data collected upon patient admission were used to examine predisposing, enabling, and need-related factors related to likelihood of program participation. RESULTS: Older age and ethnic minority status were associated with a reduction in likelihood to participate, while widowhood increased the likelihood of participation. CONCLUSION: Upon referral to a substance misuse intervention, clinicians in SNFs should be cognizant that some patients may be more likely to refuse intervention, and additional efforts should be made to engage patients at-risk for refusal.