Patient experiences of resection versus responsive neurostimulation for drug-resistant epilepsy.

This study explored illness experiences and decision-making among patients with epilepsy who underwent two different types of surgical interventions: resection versus implantation of the NeuroPace Responsive Neurostimulation System (RNS). We recruited 31 participants from a level four epilepsy center in an academic medical institution. We observed 22 patient clinic visits (resection: n = 10, RNS: n = 12) and conducted 18 in-depth patient interviews (resection: n = seven, RNS: n = 11); most visits and interviews included patient caregivers. Using an applied ethnographic approach, we identified three major themes in the experiences of resection versus RNS patients. First, for patients in both cohorts, the therapeutic journey was circuitous in ways that defied standardized first-, second-, and third- line of care models. Second, in conceptualizing risk, resection patients emphasized the permanent loss of "taking out" brain tissue whereas RNS patients highlighted the reversibility of "putting in" a device. Lastly, in considering benefit, resection patients perceived their surgery as potentially curative while RNS patients understood implantation as primarily palliative with possible additional diagnostic benefit from chronic electrocorticography. Insight into the perspectives of patients and caregivers may help identify key topics for counseling and exploration by clinicians.

The long-term impact of a comprehensive scholarly concentration program in biomedical ethics and medical humanities.

BACKGROUND: There is a strong and growing interest in biomedical ethics and medical humanities (BEMH) within medical education for facilitating key components of medical professionalism and ethics, clinical communication and observational skills, and self-care and reflective practices. Consequently, United States (US) medical institutions have begun to incorporate BEMH through formal Scholarly Concentrations (SCs). This is the first study to examine the impact of a US BEMH SC, from student experience in medical school to post-graduate development, as perceived by graduate physicians. METHODS: Graduated students who participated in the BEMH SC or did extensive BEMH research prior to the BEMH SC's establishment (n = 57) were sampled for maximum variation across graduating years. In telephone surveys and interviews, participants discussed the perceived impact of the BEMH SC on (a.) student experience during medical school and (b.) post-graduate development. Interviews were audiotaped, transcribed, and de-identified. The authors iteratively generated a codebook; two raters coded independently, adjudicated codes, and completed inter-rater reliability (IRR) tests. The authors subsequently conducted a team-based thematic analysis, identifying emergent themes. RESULTS: Nineteen BEMH graduates were interviewed. Results were analyzed according to (a.) student experience and (b.) post-graduate development. Overall, respondents perceived impacts in reinforcing knowledge and skills in clinical ethics; solidifying self-care and reflective practices; refining a sense of professional identity and integrity for ethically challenging situations; and promoting student skills, productivity, and later careers involving BEMH. CONCLUSION: A comprehensive US BEMH SC achieved the purported aims of BEMH in medical education, with graduate physicians perceiving persisting effects into clinical practice. Furthermore, the structure and format of a SC may offer additional advantages in promoting student scholarly skill and productivity, career development, and professional identity formation-core competencies identified across clinical training and ethics programs. Our findings indicate that a BEMH SC is effective in achieving a range of desired immediate and post-graduate effects and represent a particularly promising venue for BEMH in medical education. We believe these findings to be of critical significance to medical educators and administrators when considering how best to incorporate BEMH into SCs and medical curricula.

Great expectations: autism spectrum disorder and induced pluripotent stem cell technologies.

New applications of iPSC technology to research on complex idiopathic conditions raise several important ethical and social considerations for potential research participants and their families. In this short review, we examine these issues through the lens of emerging research on autism spectrum disorder (ASD). We begin by describing the current state of iPSC technology in research on ASD. Then we discuss how the social history of and current controversies in autism research combined with the emergence of autism-specific iPSC biobanks indicate an urgent need for researchers to clearly communicate the limitations and possibilities of iPSC research to ensure research participants have the ability to provide fully informed, voluntary consent. We conclude by offering recommendations to bolster informed consent for research involving iPSC biobanks, both in the specific context of ASD and more broadly.