Role In Treatment Decisions Research Articles

Patient control preferences prior to discharge after cardiac surgery

Abstract Background The impact of patient preferences and participation in the acute recovery period prior to discharge after cardiac surgery is not well understood. Although there is a plethora of literature describing pre and post discharge interventions to support patients’ recovery there is minimal evidence demonstrating the effectiveness of specific interventions that optimise recovery or patient preferences for participation in decision making related to this period of transition from hospital to home. Purpose The aim of this study was to explore patient preferences for participation in discharge planning. Methods This study took place in a major metropolitan hospital in Victoria, Australia with a population base of over 1 million people that provides over 100,000 episodes of care and approximately 850 cardiothoracic procedures annually. We recruited consecutive adult patients, able to understand and speak English who were being discharged home after cardiac surgery. Prior to discharge, a Registered Nurse conducted a semi-structured interview following patient consent where patients were asked to complete the 5 item Control Preferences Scale (CPS) in relation to 3 discharge planning questions. With each question patients were asked to rate their preferred and actual role in the decision-making process. The CPS has 5 cards each portraying a role in treatment decision making; active (1-2), collaborative (3) or passive (4-5) participation to determine what level of control patients’ desire in relation to their care. Results From 196 patients undergoing cardiac surgery 63 (32.1%) were eligible and agreed to participate. When asked about making plans for discharge 9 (14.3%) patients’ preference was to have an active role in this process, 25 (39.7%) preferred a collaborative approach and 29 (46.1%) a passive approach. Patients perceived their actual role was active (n = 10, 15.9%), collaborative (n = 17, 27.0%) or passive (n = 36, 57.1%). When asked about deciding when to go home 9 (14.3%) patients’ preference was to have an active role in this process, 18 (28.6%) preferred a collaborative approach and 36 (57.1%) preferred a passive approach. Patients perceived their actual role was active (n = 8, 12.7%), collaborative (n = 13, 20.6%) or passive (n = 42, 66.6%). When asked about their preferred role in deciding where they go when discharged 21 (33.4%) patients’ preference was to have an active role in this process, 19 (30.2%) preferred a collaborative approach and 23 (36.5%) a passive approach. Patients perceived their actual role was passive (n = 24, 38.1%), collaborative (n = 16, 25.4%) or passive (n = 23, 36.5%). Conclusion Patient preferences for control were congruous with their perceived experience of involvement in decision making which indicates patients’ preference for control is taken into account by clinicians managing the discharge planning process in this setting.

Hypertrophic Cardiomyopathy as a Form of Heart Failure with Preserved Ejection Fraction: Diagnosis, Drugs, and Procedures

Hypertrophic cardiomyopathy (HCM) is a complex and heterogeneous cardiac disorder characterized by cardiac hypertrophy disproportionate to loading stimuli (e.g. hypertension or aortic stenosis). Diagnosing HCM requires a thorough examination of clinical symptoms, with echocardiography as the key initial imaging tool. Multimodality imaging further supports diagnosis, helps assess left ventricular outflow obstruction, and aids in risk stratification for sudden cardiac death. The cornerstone of HCM management remains pharmacological therapy with β-blockers and calcium channel blockers serving as first-line agents to alleviate symptoms and reduce left ventricular outflow tract obstruction. More recently, cardiac myosin inhibitors have revolutionized the treatment paradigm for obstructive HCM. Procedural interventions such as septal reduction therapy are reserved for refractory cases. Genetic testing and risk stratification for sudden cardiac death play a critical role in treatment decisions, guiding further testing in first-degree relatives and ICD implantation in high-risk individuals. Exercise recommendations have evolved based on recent data, challenging traditional restrictions and emphasizing individualized plans.

#1686 How do older people with advanced kidney disease and their family members approach kidney treatment decision-making? A qualitative study

Abstract Background and Aims Chronic kidney disease (CKD) is common in the UK, especially amongst frail older people with multiple health problems. The survival benefit of kidney replacement therapy (KRT) for such patients is uncertain and the burdens significant, meaning patients make difficult decisions between planning for dialysis or opting for conservative kidney management (CKM). People close to individuals with advanced CKD are known to play an important role in treatment decision-making, but data exploring their perspectives are limited. This qualitative study aimed to explore older, comorbid patients’ and family members’ understanding of and views regarding treatment decision-making. Method In-depth interviews were conducted in person in 2018-2019 among older patients with advanced CKD (>80 years old or >65 with evidence of frailty or comorbidity) and least one family member (partner/spouse/child/grandchild) per patient. Interviews used open-ended questioning, supported by a topic guide based on patient input and the literature. Transcripts were analysed using inductive thematic analysis and constant comparison to identify concepts and meanings from participants’ views and reported experiences. Codes and interviews were discussed and compared among study investigators, with consideration of wider meaning, alongside reorganisation and recoding, and thematic development. Results Ten patients and 12 family members (6 spouses/partners, 5 adult children and 1 adult grandchild) were interviewed. Four themes were identified: (1) “whose decision is it anyway?”; (2) “facing uncertainty”; (3) “on death and dying” and (4) “caring and being cared for”. “Whose decision is it anyway?” speaks to perceived nuances around the ownership of decisions about kidney therapy. While some interviewees described the decision belonging solely to the patient, others described varying degrees of collaboration with and persuasion from family members (particularly partners/spouses). Clinician influence was also described by patients and family members. “Facing uncertainty” captures patients’ and their family members’ view that decisions are contingent upon largely uncertain future circumstances. “On death and dying” describes the pivotal role in treatment decision-making of patients’ and family members’ sense of life completion and feelings about death and dying. KRT was perceived as life-prolonging, while an acceptance of death and dying was seen to be important for consideration of CKM. “Caring and being cared for” elucidates the importance of caring roles between patients and their family members for decisions about the future, including the specific effect of loving relationships on the value patients and their family members assign to living. Conclusion We found both patients and family members influence treatment decisions, which they tend to view as flexible in the face of uncertainty. The desire to prolong important family relationships was a motivator for favouring KRT, in light of an understanding of KRT as life-prolonging. Kidney services should recognise the significance of family relationships to older patients’ treatment decision-making. Clinicians must ensure that patients and family members understand the implications of treatment choice for quality-of-life, prognosis, and end-of-life care. This is likely to include understanding which family members or close ones are important, involving these people in decision-making and recognising that changes in family situations may necessitate re-visiting previous decisions.

Abstract PO2-10-12: The devil is in the details: Workflow analysis of breast cancer treatment decision making and implications for decision support design

Abstract While numerous decision aids have been developed to support treatment decision-making in breast cancer1, widespread implementation remains limited due to challenges integrating these tools in clinical workflows2. Given these persistent issues, we need to better understand the complex workflows and needs of decision aid users - patients, their family caregivers, and breast cancer clinicians. Previous studies have explored various aspects of breast cancer team workflows3,4. Despite this work, it is still unclear how these complex workflows support or hinder decision aid use. In this study, we conducted an in-depth analysis of breast cancer team workflow to elicit design requirements for informatics tools to support patient-centered decision-making. This study was part of a larger project aimed at designing a COMputeried PAtient-centered Collaborative Technology (COMPACT) to support personalized decision-making for breast cancer patients. We conducted observations of clinicians and patients at one breast center, using a tablet computer with smart pen to take notes on all aspects of clinic workflow. We uploaded all observation notes into a qualitative data analysis software, Dedoose. Two researchers coded the observations in an inductive, consensus-based process. We met to review our codes and identify key themes emerging in the data. We observed 95 hours and 127 patient encounters across 20 clinician-centered and 8 patient-centered observations. We identified 10 themes related to the design of decision support, which we grouped into the 4 components of workflow6 (see Table 1). We identified numerous patient-specific factors communicated from the patient to the clinical team that influenced treatment decision-making. These “decision factors” covered the broader scope of the patient’s life that was important in the decision-making process (e.g., upcoming family wedding, work). Patients were frequently “knowledge brokers” and were asked to remember and relay information across members of the care team. We identified 28 different tools and technologies used to support treatment decision-making. Patient family caregivers (e.g., aunt, husband) played an important role in treatment decision-making. Based on these findings, we developed design requirements for informatics tools to better support patients (and clinicians). Our study highlights the complexity and interdependence of breast cancer treatment decision-making. Patients frequently made treatment decisions that influenced subsequent decisions. Decision aids typically focus on one decision or one care specialty and do not support consideration of several treatment options at one time1. Future research is needed to determine if and how decision support tools could incorporate the broader scope and interdependence between decisions to support patient-centered care. We highlight the need for informatics tools to consider the diverse and unique decision factors (e.g., hobbies) that are crucial to patient-centered decision-making. Decision support could help to elicit and incorporate these factors during treatment decision-making. However, the variable nature of these patient-specific factors presents a challenge to decision support design. Further research is needed to determine how to optimally incorporate such factors into decision support tools. We found inadequate system support for clinicians’ tasks including limited feedback loops to notify clinicians of completed tasks (e.g., mammogram, genetic testing). As a result, patients were often responsible for relaying information to and between different members of the clinical team. Given that patients only remember 50% of what clinicians tell them during visits7, a better system is needed to improve the reliability of information transfer. Our design guidelines can be used to improve the design of decision support tools and ultimately improve patient-centered decision-making. Table 1. Workflow components, themes, and associated challenges to decision support design Citation Format: Megan Salwei, Carrie Reale. The devil is in the details: Workflow analysis of breast cancer treatment decision making and implications for decision support design [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO2-10-12.

Abstract PO5-05-04: Advancing Treatment and Management of Patients with HR+/HER2- Breast Cancer: Findings from a Quality Improvement Initiative

Abstract Background: With the advent of novel oral oncolytics, the cancer care delivery model for HR+/HER2- breast cancer (BC) is evolving, shifting the responsibility for medication adherence and monitoring and managing of side effects to patients and their caregivers. In this quality improvement (QI) initiative, we aimed to uncover and address gaps in patient and provider education, risk reduction, adverse event management, and shared decision-making in order to improve outcomes for HR+/HER2+ patients on oral oncolytics. Methods: From 9/2022 to 12/2022, 54 HCPs who treat breast cancer and 111 HR+/HER2- BC patients from 4 US community oncology clinics completed surveys assessing attitudes, values, and challenges related to practice patterns, education, and therapy adherence in HR+/HER2- BC. HCPs participated in audit-feedback sessions to reflect on survey results and their own practice, and developed action plans to improve care, which were implemented in subsequent collaborative patient-provider learning sessions. Results: Top reported HCP challenges in HR+/HER2- BC care include providing patient-centered supportive care measures (32%), patient adherence/lack of follow up (22%), and individualizing treatment plans (17%). Additionally, 43% of providers reported that improved collaboration across interprofessional teams would most improve care. Top reported patient challenges include worry about and/or difficulty managing side effects from treatment (26%), difficulty scheduling visits with many different HCPs/following up (24%), and difficulty communicating with healthcare teams (16%). In surveys, 28% of patients reported frequently or very frequently missing/skipping doses of oral breast cancer medication. Top reasons for missing/skipping doses included forgetting or not having it nearby (36%), cost (21%), and side effects (20%). To address the top challenges identified in baseline surveys, HCPs developed and implemented action plans, such as improving the identification of patients at high risk of recurrence, establishing patient-provider educational sessions, increasing the use of patient navigators, incorporating oral adherence toolkits, and educating patients and staff about available supportive care resources. After implementation of patient-provider collaborative education sessions at community clinics, patients reporting high levels of knowledge about BC treatment options and communicating side effects/symptoms increased from 27% to 57%, and 37% to 77%, respectively. At 60-day follow-up, 58% of patients reported taking a more active role in treatment decision-making, and 52% reported setting reminders/alarms/using apps to remember to take medication on time. Conclusions: Patient adherence to oral oncolytic medications remains a challenge in BC treatment. This quality improvement initiative uncovered underlying barriers to effective treatment management of HR+/HER2- breast cancer patients on oral oncolytics. Action plans and educational resources were developed and implemented to address identified barriers and optimize treatment management for HR+/HER2- BC. These methods and findings represent key opportunities for improvement that can be implemented in community oncology practices to improve adherence to oral oncolytics and overall HR+/HER2- breast cancer care. Citation Format: Jane Meisel, Chelsie Anderson, Ilona Dewald, Jeffrey Carter, Cherilyn Heggen, Kelly McKinnon. Advancing Treatment and Management of Patients with HR+/HER2- Breast Cancer: Findings from a Quality Improvement Initiative [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO5-05-04.

Women's Knowledge of Genomic Testing and Precision Medicine in Breast Cancer Treatment Decision-Making.

To understand awareness of genetic and genomic testing, as well as decision-making, in women diagnosed with breast cancer. 29 African American/Black and Latina/Hispanic women diagnosed with breast cancer. A semistructured interview guide was used in focus groups conducted via videoconference. Transcripts were analyzed using thematic analysis. Many of the women understood the concept of genetic testing to identify the BRCA1/BRCA2 variant, but none of them were aware of genomic testing and its implications for personalized medicine. Participants discussed provider and patient roles in treatment decision-making, identifying roles that the physician might play in treatment planning, from primary decision-maker to collaborator. As the number of precision cancer treatments expands, patients must be able to comprehend the information provided to make informed decisions about their treatment. Providers should do a better job of explaining potential treatments so that patients feel they are part of the decision-making process. Addressing gaps in treatment access and uptake requires providers to prioritize patient engagement and understanding.

Identifying the process and challenge of drug administration during the Covid-19 pandemic within region in the absence of sufficient evidence: A qualitative study

BackgroundThe World Health Organization (WHO) has not identified a definitive cure for COVID-19, recommending supportive treatment or antimicrobial therapy based on individual patient needs. This study explores the processes and challenges emergency physicians at Rasul Akram Hospital in Tehran face when prescribing medications with insufficient evidence during the COVID-19 pandemic. MethodsA qualitative study using conventional content analysis. Purposeful sampling with maximum variation was employed until data saturation was achieved. Seventeen participants (5 women, 12 men) aged 32 to 55 underwent individual in-depth interviews. ResultsAnalysis of the data from the interviews revealed three main categories, 11 subcategories, and 20 themes. Patient-related factors, including mental conditions, fear, and reliance on rumors, significantly influence healthcare decision-making. Financial, cultural, and social challenges faced by patients also impact treatment choices. Factors related to hospitals and companies, such as economic advertising and restrictions, can affect patient care. Physician-related factors, such as adherence to protocols and consideration of traditional medicine, play a key role in treatment decisions. ConclusionPatient-related, hospital-related, and physician-related factors are essential in shaping treatment decisions in healthcare settings. Understanding and addressing these diverse influences are crucial for providing effective and personalized healthcare. The complexity of decision-making in healthcare, especially during the pandemic, underscores the importance of considering and navigating these various factors to deliver optimal care tailored to patients' needs and preferences.

Deep learning based assessment of hemodynamics in the coarctation of the aorta: comparison of bidirectional recurrent and convolutional neural networks.

The utilization of numerical methods, such as computational fluid dynamics (CFD), has been widely established for modeling patient-specific hemodynamics based on medical imaging data. Hemodynamics assessment plays a crucial role in treatment decisions for the coarctation of the aorta (CoA), a congenital heart disease, with the pressure drop (PD) being a crucial biomarker for CoA treatment decisions. However, implementing CFD methods in the clinical environment remains challenging due to their computational cost and the requirement for expert knowledge. This study proposes a deep learning approach to mitigate the computational need and produce fast results. Building upon a previous proof-of-concept study, we compared the effects of two different artificial neural network (ANN) architectures trained on data with different dimensionalities, both capable of predicting hemodynamic parameters in CoA patients: a one-dimensional bidirectional recurrent neural network (1D BRNN) and a three-dimensional convolutional neural network (3D CNN). The performance was evaluated by median point-wise root mean square error (RMSE) for pressures along the centerline in 18 test cases, which were not included in a training cohort. We found that the 3D CNN (median RMSE of 3.23mmHg) outperforms the 1D BRNN (median RMSE of 4.25mmHg). In contrast, the 1D BRNN is more precise in PD prediction, with a lower standard deviation of the error (±7.03mmHg) compared to the 3D CNN (±8.91mmHg). The differences between both ANNs are not statistically significant, suggesting that compressing the 3D aorta hemodynamics into a 1D centerline representation does not result in the loss of valuable information when training ANN models. Additionally, we evaluated the utility of the synthetic geometries of the aortas with CoA generated by using a statistical shape model (SSM), as well as the impact of aortic arch geometry (gothic arch shape) on the model's training. The results show that incorporating a synthetic cohort obtained through the SSM of the clinical cohort does not significantly increase the model's accuracy, indicating that the synthetic cohort generation might be oversimplified. Furthermore, our study reveals that selecting training cases based on aortic arch shape (gothic versus non-gothic) does not improve ANN performance for test cases sharing the same shape.

Siamese model for collateral score prediction from computed tomography angiography images in acute ischemic stroke.

Imaging biomarkers, such as the collateral score as determined from Computed Tomography Angiography (CTA) images, play a role in treatment decision making for acute stroke patients. In this manuscript, we present an end-to-end learning approach for automatic determination of a collateral score from a CTA image. Our aim was to investigate whether such end-to-end learning approaches can be used for this classification task, and whether the resulting classification can be used in existing outcome prediction models. The method consists of a preprocessing step, where the CTA image is aligned to an atlas and divided in the two hemispheres: the affected side and the healthy side. Subsequently, a VoxResNet based convolutional neural network is used to extract features at various resolutions from the input images. This is done by using a Siamese model, such that the classification is driven by the comparison between the affected and healthy using a unique set of features for both hemispheres. After masking the resulting features for both sides with the vascular region and global average pooling (per hemisphere) and concatenation of the resulting features, a fully connected layer is used to determine the categorized collateral score. Several experiments have been performed to optimize the model hyperparameters and training procedure, and to validate the final model performance. The hyperparameter optimization and subsequent model training was done using CTA images from the MR CLEAN Registry, a Dutch multi-center multi-vendor registry of acute stroke patients that underwent endovascular treatment. A separate set of images, from the MR CLEAN Trial, served as an external validation set, where collateral scoring was assessed and compared with both human observers and a recent more traditional model. In addition, the automated collateral scores have been used in an existing functional outcome prediction model that uses both imaging and non-imaging clinical parameters. The results show that end-to-end learning of collateral scoring in CTA images is feasible, and does perform similar to more traditional methods, and the performance also is within the inter-observer variation. Furthermore, the results demonstrate that the end-to-end classification results also can be used in an existing functional outcome prediction model.

Role of 18F-fluorodeoxyglucose positron-emission tomography/computed tomography in restaging of adrenocortical carcinoma.

The objective was to retrospectively evaluate the contribution of fluorodeoxyglucose [18F] positron emission tomography/computed tomography (18FDG-PET/CT) to the re-staging of adrenocortical carcinoma (ACC). A total of 16 patients (10 males and 6 females), who underwent adrenalectomy due to adrenocortical carcinoma and 18FDG-PET/CT scan to re-stage the tumor between July 2007 and April 2013, were included in the present study. The mean age was 53.37 ± 13.91 years (min: 30, max: 74) The patients were required to fast for six hours prior to scanning, and whole-body PET scanning from the skull base to the upper thighs was performed approximately 1 h after the intravenous injection of 555 MBq of F-18 FDG. Whole body CT scanning was performed in the cranio-caudal direction. FDG-PET images were reconstructed using CT data for attenuation correction. Suspicious recurrent or metastatic lesions were confirmed by histopathology or clinical follow-up. Sensitivity, specificity, positive predictive value, negative predictive value and accuracy of 18FDG-PET/CT were 100%, 83.3%, 90.9%, 83.3%, and 93.7%, respectively. 18FDG-PET/CT detects local recurrence and/or distant metastases with high accuracy in the re-staging of operated adrenocortical carcinoma. It is considered that the procedure could play an important role in treatment decision after the operation and post-operative follow-up and could influence the entire decision-making process.

Integrative medicine for fecal incontinence: reflections on eastern and western experiences

Fecal incontinence has emerged as a global health concern. This article explores an integrative medical model for fecal incontinence by illustrating its conceptual framework and scope, drawing from multidisciplinary consensus and guidelines developed over the past three decades, both internationally and through personal reflection. This integrative medical model is patient-centered, emphasizes the patient's role in treatment decision-making, and recognizes the value of patient-reported outcomes measure. The incorporation of multidisciplinary assessment tools such as the IMPACT scale promises to enhance the standards of clinical practice and research. Furthermore, learning from international guidelines provides insights into interdisciplinary forces, including acupuncture, to formulate consensus guidelines that align with the unique healthcare landscape in China.

Understanding Patient Perspectives Toward Shared Decision-Making in Patients With Pulmonary Hypertension

Clinical guidelines for pulmonary hypertension (PH) recommend shared decision-making and individualized treatment. However, patient perspectives on PH treatment goals, preference toward a decision-making style of treatment, and adoption of shared decision-making remain unclear. This cross-sectional questionnaire-based study assessed the patients' preferred and actual participation role in treatment decision-making, rated on 5 scales (ranging from passive [patients leave all decisions to physicians] to active [patients make the decision after physicians show patients several options]) and evaluated the concordance between preferred and actual participation roles. The important factors underlying patients' perspectives in treatment decision-making (i.e., prognosis; symptom, financial, family, and social burdens; patient values; and physician recommendation) were evaluated. Univariate logistic regression analysis was performed to determine the patients with a positive preference toward "physician recommendation" in treatment decision-making. Among 130 patients with PH (median age: 58years; mean pulmonary arterial pressure: 23mm Hg; 27.7% were males), 59.2% preferred that "physicians make the decision regarding treatment after showing patients therapeutic options (i.e., intermediate between passive and active roles)." The patient-preferred and actual participation roles in decision-making had moderate agreement (Cohen's kappa=0.46). The most important factor in treatment decisions was "symptom burden reduction" (93.8%). Although 85.0% of patients chose "physician recommendation" as an important factor, 49.6% chose "alignment with my values." The determinants of patients who chose "physician recommendation" were less severe hemodynamics and better functional capacity. In conclusion, patients with PH preferred that the "physicians make the decision after showing patients therapeutic options" and prioritized physician recommendation over their values.

Preoperative detection of lymphovascular invasion in rectal cancer using intravoxel incoherent motion imaging based on radiomics.

Lymphovascular invasion (LVI) status plays an important role in treatment decision-making in rectal cancer (RC). Intravoxel incoherent motion (IVIM) imaging has been shown to detect LVI; however, making better use of IVIM data remains an important issue that needs to be discussed. We proposed to explore the best way to use IVIM quantitative parameters and images to construct radiomics models for the noninvasive detection of LVI in RC. A total of 83 patients (LVI negative (LVI-): LVI positive (LVI+)=51:32) with postoperative pathology-confirmed LVI status in RC were divided into a training group (n=58) and a validation group (n=25). Images were acquired from a 3.0 Tesla machine, including oblique axial T2 weighted imaging (T2WI) and IVIM with 11 b values. The ADC, D, D* and f values were measured on IVIM maps. The ROIs of tumors were delineated on T2WI, DWI, ADCmap , and Dmap images, and three mapping methods were used: ROIs_mapping from DWI, ROIs_mapping from ADCmap , and ROIs_mapping from Dmap . Three-dimensional radiomics features were extracted from the delineated ROIs. Multivariate logistic regression was used for radiomics feature selection. Radiomics models based on different mapping methods were developed. Receiver operating characteristic (ROC) curves, calibration, and decision curve analyses (DCA) were used to evaluate the performance of the models. Model B, which was constructed with radiomics features from ADCmap , Dmap and fmap by "ROIs_mapping from DWI" and T2WI (AUC 0.894), performed better than other models based on single sequence (AUC 0.600-0.806) and even better than Model A, which was based on "ROIs_mapping from ADC" and T2WI (AUC 0.838). Furthermore, an integrated model was constructed with Model B and the IVIM parameter (f value) with an AUC of 0.920 (95% CI: 0.820-1.000), which was higher than that of Model B, in the validation group. The integrated model incorporating the radiomics features and IVIM parameters accurately detected LVI of RC. The "ROIs_mapping from DWI" method provided the best results.

The impact of classic Hodgkin lymphoma on informal caregivers: results from the CONNECT cross-sectional survey

PurposeAs part of the CONNECT study, we evaluated the caregiver role in treatment decision-making when caring for patients with classic Hodgkin lymphoma (cHL) in the USA.MethodsThe CONNECT caregiver survey was administered online December 2020–March 2021 to self-identified adult caregivers of cHL patients recruited from patient referrals and online panels. The caregiver’s role in treatment decision-making, health-related quality of life (HRQoL, PROMIS-Global), and work impacts (WPAI:CG) were assessed.ResultsWe surveyed 209 caregivers (58% women; median age 47 years; 54% employed; 53% spouse/partner); 69% of patients cared for were diagnosed with cHL in the past 1–2 years, with 48% having stage III/IV cHL and 29% in remission. More spouse/partner than other caregivers were involved in caregiving at symptom onset (61% vs 27%), whereas more other than spouse/partner caregivers began after first treatment (34% vs 5%). Cure, caregivers’ top treatment goal (49%), was rated higher by spouse/partner than other caregivers (56% vs 42%). More spouse/partner than other caregivers were involved in treatment option discussions with physicians (52% vs 28%), were involved in patients’ treatment decisions (54% vs 23%), and were aligned with patients’ treatment goals (93% vs 79%). While caregivers reported HRQoL similar to that of the general population, nearly 30% of employed caregivers reported work impairment.ConclusionCure was caregivers’ top treatment goal. Spouse/partner vs other caregivers were more involved, were involved earlier, and reported greater alignment with patient treatment goals and decision-making. Caregivers reported good HRQoL; however, caregiving impacted work productivity regardless of patient relationship.

Perspectives of hospitalized heart failure patients: preferred and perceived participation roles in treatment decisions.

Shared decision-making (SDM) is a pivotal process in seeking optimal individual treatment and incorporating clinical evidence and patients' autonomous preferences. However, patients' actual attitudes toward participation in decision-making for state-of-the-art heart failure (HF) treatment remain unclear. We conducted a questionnaire-based survey distributed by nurses and physicians specializing in HF care to assess patients' preferred and perceived participation roles in treatment decision-making during the index hospitalization, rated on five scales (from extremely passive to purely autonomous attitudes). Simultaneously, we investigated the important factors underlying treatment decision-making from the perspective of hospitalized HF patients. Of the 202 patients who were approached by our multidisciplinary HF team between 2017 and 2020, 166 (82.2%) completed the survey. Logistic regression analyses were conducted to identify the clinical determinants of patients who reported that they left all decisions to physicians (i.e., extremely passive attitude). Of the 166 participants (male 67.5%, median age 73years), 32.5% preferred an extremely passive attitude, while 61.4% reported that they actually chose an extremely passive attitude. A sole determinant of choosing an extremely passive decision-making role was lower educational status (odds ratio: 2.11, 95% confidence interval 1.11-4.00). The most important factor underlying the decision-making was "Physician recommendation" (89.2%). Notably, less than 50% considered "In alignment with my values and preferences" as an important factor underlying treatment decision-making. The majority of HF patients reported that they chose an extremely passive approach, and patients prioritized physician recommendation over their own values and preferences.

The diagnostic landscape of HRD testing based on cross-sectional survey of physicians and molecular biologists conducting testing (INDICATOR ONE).

5585 Background: Homologous recombination deficiency (HRD) occurs in approximately 50% of epithelial ovarian cancer (OC) cases. As HRD-positive tumors are more sensitive to poly(ADP-ribose) polymerase inhibitors (PARPi), HRD testing (determined by BRCAm and genomic instability score) identifies advanced ovarian cancer (AOC) patients who will benefit most from PARPi treatment . The value of these tests is recognized by guidelines to inform PARPi maintenance treatment decisions following first-line chemotherapy. This study characterizes the current testing landscape. Methods: This non-interventional, cross-sectional, web-based survey will be repeated in three waves, 9-12 months apart. Reported results are from Survey Wave 1 open from July to November 2022 and conducted among physicians and clinical laboratory heads/molecular biologists in the US and Europe (UK, France, Germany, Austria). Participants were recruited from clinical sites/laboratories known to be conducting HRD testing and via a standing physician panel. Results: Responses were received from 287 eligible participants (representing invitees from ~9% sites and < 2% panelists), 265 of whom completed the full survey (Europe: 153, US: 112; 228 physicians, 37 clinical laboratory heads/molecular biologists). Physicians ordered HRD testing for 70% ± 27% (mean ± SD) of newly diagnosed AOC patients. Nearly all physicians ordered the test to inform treatment decisions (n = 222; 97%). Physicians were most likely to conduct testing at stage 3 or 4 of OC diagnosis (Europe: n = 89, 64%; US: n = 63, 71%), followed by OC diagnosis regardless of stage (Europe: n = 51, 37%, US: n = 51, 57%). When European participants selected all types of tests used MyChoice CDx, Myriad Genetics (n = 82, 54%) was most commonly selected, followed by FoundationOne CDx, Foundation Medicine (n = 38, 25%). US participants used FoundationOne CDx (n = 62, 55%), followed by MyChoice CDx (n = 49, 44%), and QIAGEN QIASeq HRD (n = 38, 34%). Test costs were often partially (Europe: n = 47; 27%; US: n = 125; 53%) or fully covered (Europe: n = 89; 51%; US: n = 48; 21%). Results were received within 10 ± 6 (mean ± SD) working days in the US and 16 ± 11 working days in Europe. Testing guided treatment decisions ‘always/often’ (Europe: n = 117, 84%; US: n = 65, 73%) or ‘sometimes’ (Europe: n = 21, 15%; US: n = 23, 26%). Most European (n = 108, 78%) and US (n = 71, 80%) institutions offered genetic counselling. Conclusions: Among physicians and molecular biologists known to be conducting HRD testing, most newly diagnosed AOC patients were tested for HRD, and results usually played a role in treatment decisions. Variations in testing between the US and Europe include test types, test cost coverage, and time to receive results. Differences indicate potential areas for improvement in HRD testing to further benefit patients.

MP40-16 MICROULTRASOUND IN THE DETECTION OF THE INDEX LESION IN PROSTATE CANCER

You have accessJournal of UrologyCME1 Apr 2023MP40-16 MICROULTRASOUND IN THE DETECTION OF THE INDEX LESION IN PROSTATE CANCER Adriana Marcela Pedraza Bermeo, Raghav Gupta, Michael A. Gorin, Mani Menon, and Ashutosh Tewari Adriana Marcela Pedraza BermeoAdriana Marcela Pedraza Bermeo More articles by this author , Raghav GuptaRaghav Gupta More articles by this author , Michael A. GorinMichael A. Gorin More articles by this author , Mani MenonMani Menon More articles by this author , and Ashutosh TewariAshutosh Tewari More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000003278.16AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: The natural history of PCa is driven by an index lesion (IL), which is often either the largest in size and/or highest in grade. By analyzing genome-wide single nucleotide polymorphisms and copy number variations, researchers have been able to show that the vast majority of metastatic prostate cancers have monoclonal origins. Therefore, the identification of IL plays a key role in treatment decision-making.Microultrasound (MUS) provides a resolution of up to 70 microns. Evidence seems to suggest comparable performance to mpMRI in the identification of clinically significant prostate cancer. The goal of our study is to evaluate the accuracy of a transrectal MUS for the detection of the IL in prostate cancer compared to mpMRI. METHODS: Two hundred and eighty-one patients who underwent robot-assisted radical prostatectomy (RARP) from June 2021 to May 2022 were included. All received mpMRI and MUS within three months prior to RARP. MUS was performed by experienced urologists blinded to mpMRI and biopsy results. The IL in the radical prostatectomy specimen was defined as the lesion with extraprostatic extension, the highest Gleason Score (GS), or the largest tumor volume if the GS was the same. A correlation between imaging and final pathology findings was performed. A descriptive statistical analysis is presented. RESULTS: The patients’ prostates were analyzed in 12 regions (anterior/posterior, right/left, apex/mid/base). A total of 3,372 regions were identified. Of these, 731 were involved by the IL. Compared to final pathology, MUS demonstrated a sensitivity, specificity, PPV, and NPV of 66%, 96%, 81%, and 92%, respectively, while mpMRI showed a sensitivity, specificity, PPV, and NPV of 66%, 97%, 87%, and 91%, respectively, for the detection of the IL. Most of the lesions missed by MUS were located in the anterior zone (62%). CONCLUSIONS: MUS has comparable diagnostic performance to mpMRI in identifying prostate cancer index lesion. MUS is less expensive, provides a real-time anatomic evaluation, and has no lag in the acquisition process. Prospective randomized trials are needed to verify our results. Source of Funding: None © 2023 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 209Issue Supplement 4April 2023Page: e551 Advertisement Copyright & Permissions© 2023 by American Urological Association Education and Research, Inc.MetricsAuthor Information Adriana Marcela Pedraza Bermeo More articles by this author Raghav Gupta More articles by this author Michael A. Gorin More articles by this author Mani Menon More articles by this author Ashutosh Tewari More articles by this author Expand All Advertisement PDF downloadLoading ...

What are side effects?

Side effects are ubiquitous in medicine and they often play a role in treatment decisions for patients and clinicians alike. Philosophers and health researchers often use side effects to illustrate issues with contemporary medical research and practice. However, technical definitions of 'side effect' differ among health authorities. Thus, determining the side effects of an intervention can differ depending on whose definition we assume. Here I review some of the common definitions of side effect and highlight their issues. In response, I offer an account of side effects as jointly (i) unintended and (ii) effects due to the causal capacities or invariances of an intervention. I discuss (i) by examining the intentions or reasons behind therapeutic interventions, and I discuss (ii) by appealing to a manipulationist model of causation. The analysis here highlights that side effects are conceptually distinct from related outcomes like adverse events, adverse drug reactions, and placebo effects. The analysis also allows for reflection on the utility of 'side effect' as a technical term in medical research and practice.

Cytopathological features associated with POLE mutation in endometrial cancer.

For patients with endometrial cancer, the POLE (polymerase epsilon) mutation (POLEmut)-subtype, one of four molecular-analysis-based categories in the Cancer Genome Atlas (TCGA), has the best prognosis. The following histological characteristics are typically observed in endometroid carcinoma cases with the POLEmut-subtype: (1) the presence of tumour giant cells, (2) numerous tumour-infiltrating lymphocytes (TILs) and/or peri-tumoral lymphocytes, and (3) a high grade. However, in the context of cytology, the morphological characteristics of this subtype remain unknown. DNA extracted from formalin-fixed paraffin-embedded (FFPE) tissues was subjected to next-generation sequencing analysis and categorised according to the TCGA classifications. Genomic mutation, tumour mutation burden (TMB), and microsatellite instability were also assessed. Cytological specimens of resected uteri obtained using the Papanicolaou method were histologically separated into three types. Seven out of 112 patients (6%) with endometrial cancer were diagnosed with the POLEmut-subtype between January 2019 and August 2021. Tumour giant cells were observed in three cases (43%) on histology and cytology. TIL and/or peritumoral lymphocytes with inflammatory cells were detected in five cases (71%) on histology and three cases (43%) on cytology. Cases in which these three characteristics were observed on both cytology and histology may have belonged to the POLEmut-subtype. There were no cases in which these characteristics were absent on histology but present on cytology. TMB tended to be higher in cases when the three characteristics were observed in both cytological and histological findings. Preoperative endometrial cytology highlighted the characteristics of the POLEmut-subtype in the histological analysis of resected uterine specimens and has the potential to play an important role in treatment decisions.

Couples coping with advanced prostate cancer: an explorative study on decision-making preferences, self-efficacy and fear of progression.

To date, there is a lack of understanding of the treatment/disease-related health behaviors of patients with advanced prostate cancer (PCa) and their spouses. The purpose of this study was to explore the characteristics of treatment decision-making (DM) preferences, general self-efficacy (SE) and fear of progression (FoP) among couples coping with advanced PCa. In this explorative study, 96 patients with advanced PCa and their spouses answered the multiple choice version of the Control Preferences Scale (CPS, regarding DM), General Self-Efficacy Short Scale (ASKU, regarding SE), and short form of the Fear of Progression Questionnaire (FoP-Q-SF, regarding FoP). Corresponding questionnaires were employed for patients' spouses were evaluated, and correlations were subsequently drawn. More than half of the patients (61%) and spouses (62%) preferred active DM. Collaborative DM was preferred by 25% of patients and 32% of spouses, and 14% of patients and 5% of spouses preferred passive DM. FoP was significantly higher among spouses than among patients (p < 0.001). The difference in SE was not significant between patients and spouses (p = 0.064). FoP and SE negatively correlated among patients (r = - 0.42; p < 0.001) and among spouses (r = - 0.46; p < 0.001). DM preference did not correlate with SE and FoP. High FoP and low general SE are related among both patients with advanced PCa and their spouses. FoP seems to be higher among female spouses than among patients. Couples seem to be largely in agreement when it comes to playing an active role in treatment DM. www.germanctr.de , number DRKS 00013045.