Implementing routine communication about costs of cancer treatment: Perspectives of providers, patients, and caregivers

Objectives Rising costs in oncology care often impact patients and families directly, making communication about costs and financial impacts of treatment crucial. Cost expenditures could offer opportunities for estimation and prediction, affording personalized conversations about financial impact. We sought to explore providers’, patients’, and caregivers’ preferences towards implementing communication about cost, including when, how, and by whom such information might be provided. Methods We conducted semi-structured phone interviews with a diverse population including 12 oncology providers, 12 patients, and 8 patient caregivers (N = 32). The constant comparative method was used to identify mutually agreed upon themes. Results Participant groups differed in their concerns surrounding cost communication, namely whether they want to receive this information and how such information might impact provider and patient treatment decisions. All participants agreed that oncology providers should not be leading cost conversations. Patients and caregivers identified social workers or financial advisors as most equipped to communicate about cost. Participants emphasized timely cost conversations, ideally around the time of diagnosis. Participants favored various metrics of financial impact beyond overall costs of care including disability, days lost from work, and out-of-pocket expenses. Conclusion Cost transparency should be incorporated into usual care; however, there are several challenges to making cost conversations a part of everyday practice. Patients and family members need resources related to cost to aid in decision-making and those delivering cost information should have competency in oncology, financial advisement, and patient-centered care

Qualitatively exploring the impact of a relationship-centered communication skills training program in improving patient perceptions of care

Objective: To explore qualitative patient experience comments before and after a relationship-centered communication skills training to understand patient experience, program impact, and opportunities for improvement. Methods: Qualitative patient experience evaluation data was captured from January 2016 to December 2018 for 483 health care clinicians who participated in the skills training. A random sampling of available open-ended patient comments (N = 33,223) were selected pre-training (n = 668) and post-training (n = 566). Comments were coded for valence (negative/neutral/positive), generality versus specificity, and based on 12 communication behaviors reflective of training objectives. Results: No significant difference was found in the valence of comments, or generality versus specificity of comments before and after the training. A significant decrease was present in perceived clinician concern. “Confidence in care provider” was the communication skill most frequently identified in comments both pre- and post-training. Conclusion: Perceptions of interactions largely remained the same following training. Key relationship-centered communication skills require further attention in future training efforts. Measurements of patient satisfaction and engagement may not adequately represent patient experience. Innovation: This study identified areas for improvement in the training program and offers a model for utilizing patient experience qualitative data in understanding communication training impact

Goals of Care Documentation: Insights from A Pilot Implementation Study

ContextThe Life Sustaining Treatment Decision Initiative is a national effort by the Veterans Health Administration to ensure goals of care documentation occurs among all patients at high risk of life-threatening events. ObjectivesExamine likelihood to receive goals of care documentation and explore associations between documentation and perceived patient care experience at the individual and site level. MethodsRetrospective, quality improvement analysis of initiative pilot data from four geographically diverse Veterans Affairs (VA) sites (Fall 2014-Winter 2016) before national roll-out. Goals of care documentation according to gender, marital status, urban/rural status, race/ethnicity, age, serious health condition, and Care Assessment Needs scores. Association between goals of care documentation and perceived patient care experience analyzed based on Bereaved Family Survey outcomes of overall care, communication, and support. ResultsVeterans were more likely to have goals of care documentation if widowed, urban residents, and of white race. Patients older than 65-years and those with a higher Care Assessment Needs score were twice as likely as a frail patient to have goals of care documented. One pilot site demonstrated a positive association between documentation and perceived support. Pilot site was a statistically significant predictor of the occurrence of goals of care documentation and Bereaved Family Survey scores. ConclusionOlder and seriously ill patients were most likely to have goals of care documented. Association between a documented goals of care conversation and perceived patient care experience were largely unsupported. Site-level largely contributed to understanding the likelihood of documentation and care experience

Humanism in telemedicine: Connecting through virtual visits during the COVID-19 pandemic

The COVID-19 pandemic is spurring the massive deployment of telemedicine to prevent risk of infection and address healthcare workforce demands. In primary care, many visits have shifted from in-person to telemedicine, introducing a potential barrier to the human connection that is central to clinical care. We adapted existing frameworks that seek to foster humanism in clinical care-the Four Habits Model and Presence 5-to the virtual care context. Reconceptualizing these frameworks to video visits in particular yields strategies for four phases of the visit - (1) Before the Visit: Set up for Success, (2) Beginning the Visit: Establish a Connection, (3) Throughout the Visit: Invest in the Relationship and the Patient's Story, and (4) Completing the Visit: End on a Meaningful Note. Adopting explicit humanistic practices can help clinicians foster meaningful connections with patients through video visits amidst this challenging pandemic and in the future as telemedicine becomes more widely integrated into clinical care.This study was supported by a grant from the Gordon and Betty Moore Foundation (#6382; PIs Donna Zulman and Abraham Verghese). Megha Shankar is supported by a VA Office of Academic Affairs Advanced Fellowship in Health Services Research. The views expressed herein are those of the authors and do not necessarily reflect the views of the Department of Veterans Affairs, the Gordon and Betty Moore Foundation, or Stanford University School of Medicine.https://deepblue.lib.umich.edu/bitstream/2027.42/154738/1/Shankar article file.pdfDescription of Shankar article file.pdf : Main articl

Role of cytoskeletal abnormalities in the neuropathology and pathophysiology of type I lissencephaly

Type I lissencephaly or agyria-pachygyria is a rare developmental disorder which results from a defect of neuronal migration. It is characterized by the absence of gyri and a thickening of the cerebral cortex and can be associated with other brain and visceral anomalies. Since the discovery of the first genetic cause (deletion of chromosome 17p13.3), six additional genes have been found to be responsible for agyria–pachygyria. In this review, we summarize the current knowledge concerning these genetic disorders including clinical, neuropathological and molecular results. Genetic alterations of LIS1, DCX, ARX, TUBA1A, VLDLR, RELN and more recently WDR62 genes cause migrational abnormalities along with more complex and subtle anomalies affecting cell proliferation and differentiation, i.e., neurite outgrowth, axonal pathfinding, axonal transport, connectivity and even myelination. The number and heterogeneity of clinical, neuropathological and radiological defects suggest that type I lissencephaly now includes several forms of cerebral malformations. In vitro experiments and mutant animal studies, along with neuropathological abnormalities in humans are of invaluable interest for the understanding of pathophysiological mechanisms, highlighting the central role of cytoskeletal dynamics required for a proper achievement of cell proliferation, neuronal migration and differentiation

Comparing Enacted and Perceived Parental Communication as Predictors of Adolescents’ Emotion Regulation in Families with Harmful versus Non-Harmful Parental Alcohol Use

Emotion regulation is an important skill that adolescents typically learn through early interactions with their primary caregivers. Associations between parental communication and adolescent emotion regulation are well-documented however, it is unclear whether the parent’s actual communication behavior or adolescents’ perceptions of the parent’s behavior is a more robust predictor of emotion regulation outcomes. This study used Baumrind’s parenting styles typology as a theoretical foundation for examining parents’ enacted responsiveness and control and adolescents’ perceptions of their parent’s responsiveness and control during conversation as competing predictors of adolescents’ self-reported emotion regulation during two parent-child interactions. Sixty parent-adolescent dyads participated in an interaction-based study comparing communication dynamics between families with (n = 30) and without harmful parental alcohol use (n = 30). Parent-child interactions were coded by outside observers for the presence of parental responsiveness and control and adolescents completed self-report measures of their perceptions of the parent’s responsiveness and control and their own emotion regulation following the interactions. Results indicated that adolescent perceptions of parental communication were stronger predictors of adolescent emotion regulation than the observed parental communication behavior. In addition, perceived parental control was more strongly associated with adolescent emotion regulation in families with harmful parental alcohol use