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Exploring Attitudes Towards Newly Approved Therapeutics in Prenatal Genetic Counseling Practice
Get PDFCystic fibrosis (CF) care has rapidly evolved over the past decade due to the introduction of CFTR modulators and continued quality improvement efforts, yet research from 2013 suggests that prenatal genetic counselors often did not feel knowledgeable discussing newer CF treatments with patients and expressed the need to refer to a CF specialist (Elsas, 2017). Given that the intervening years have allowed for collection of long-term data about CFTR modulators and that the recently approved modulator Trikafta (tez/elx/iva) is available to 90% of the CF population, it is appropriate to re-evaluate the status of prenatal genetic counselors’ awareness of and attitudes towards discussing newly approved treatments with patients. The present study aimed to gather that information and toanalyze how likely counselors were to discuss quality of life and treatment of CF with prospective parents experiencing a prenatal diagnosis of CF. Members of the NSGC Prenatal Special Interest Group (N=866) were provided with information about the status of currently approved CFTR modulators and assessed before and after viewing the information. They were presented with clinical scenarios and asked to rate their perceived impact of CF and CF treatments along with the likelihood that they would discuss potential benefits and limitations with parents experiencing a prenatal diagnosis. Of the 866 members surveyed, 53 (6.12%) completed the questionnaire. Results indicated that nearly all (98.11%) respondents had heard of CFTR modulators and were not concerned about instilling false hope (84.9%) when discussing them with prenatal patients. The majority agreed that providing information about Trikafta (elx/tez/iva) could affect pregnancy management decisions (58.49%). Compared to most respondents (79.25%) who would discuss the availability of gene therapies for genetic conditions such as SMA and sickle cell disease, only about half of respondents would mention Trikafta (tez/elx/iva) to patients directly but would refer patients to a CF specialist. These data suggest that even when prenatal genetic counselors are familiar with new CF treatment options, they are influenced by their perceived impact of those treatments and their understanding of a genetic counselor’s role. Further clinical guidance regarding discussion of newly approved CF treatments as well as the development of clear definitions of specialty roles within the genetic counseling field are needed
The Impact of a Lynch Syndrome Diagnosis by Population Genomic Screening on Family Communication, Medical Management, and Lifestyle Changes
Get PDFThe purpose of population genomic screening programs is to help in prevention and treatment of conditions that takes into account an individual’s unique genetics, environmental, and lifestyle factors. Through this “genome-first” approach, individuals at increased lifetime risk for certain conditions are identified, allowing them and their relatives to qualify for preventative medical care and surveillance (Schwartz et al., 2018). An example institution that utilizes this approach is Geisinger’s MyCode Community Initiative, where their goal is to “make healthcare better” through research and its application to patient care (MyCode Community Health Initiative, n.d.). MyCode reports back medically actionable results for conditions associated with increased risks for cardiovascular diseases and developing cancer. One of the hereditary cancer syndromes that MyCode reports back to clinical care is Lynch syndrome (LS), a condition with nationally recognized guidelines for preventative surveillance measures. MyCode participants with an LS-associated variant have an interdisciplinary approach to medical care made available to them, being offered optional access to methods of facilitating family communication, instituting changes to medical management, and considering lifestyle modifications. In this study, 17 MyCode participants who received actionable LS results were interviewed to assess potential facilitators and barriers affecting family communication, follow-up medical care, and modifying lifestyle
Through the Stage Door, a Spotlight on \u27Backstage\u27 Work: Women Designers and Stagehands in Theatrical Production
Get PDFThe narrative within theatre history has been predominantly male, especially regarding those who work in technical production. When historians speak to women’s participation in theatre, the focus is often on performers, directors, and playwrights. Women designers are treated as anomalies, with a paucity of scholarship written about women stagehands. This thesis applies a social perspective to analyzing women’s experiences in theatrical production, attempting to dismantle the gendered hierarchy of theatrical labor. Rather than focusing on individual achievements, I grouped women as cohorts. The first cohort comprises pioneer women designers; I examine how women gained the skills necessary for United Scenic Artists Local 829 membership. The second cohort is made up of women stagehands who joined Locals One and Four of the International Alliance of Theatrical Stage Employees, after the passage of Title VII. Finally, I investigated the effects of the ongoing COVID-19 pandemic on women stagehands in Local Four. I pay keen attention to the struggles and hardships women have faced once in theatrical unions and draw on oral testimony collected from members of the second and third cohorts. Through this methodology, my research shows that women created alternative pathways to membership in the aforementioned unions. These alternatives include education and training programs, networks of women workers, and mastery of new technologies. In sum, I establish that women are not only capable designers and stagehands but have also been equal contributors to the rise and success of modern theatre. The goal of this endeavor is to promote the creation of a more equitable workplace for all theatrical workers
Patient and Provider Response to a Prenatal Pre-Visit Education Chatbot
Get PDFChatbots are artificial intelligence programs designed to mirror human conversation via text or speech and have quickly been integrated in medicine, including genomics and genetic counseling. Much of the literature has primarily focused on participants\u27 experiences and attitudes on the use of chatbots, with limited knowledge surrounding the perspectives and opinions of providers. Geisinger and Invitae co-developed a HIPAA-compliant prenatal pre-visit educational chatbot that provides routine patient education on genetic principles and genetic tests that are performed during the first and second trimester of pregnancy. Thirteen out of 310 patients who completed the chatbot were consented and interviewed to explore patients’ experiences. Patients were all females, with an average of at least one live birth, and an average age of 31 years. Twelve out of 13 patients who completed the phone interview reported that they were in their first trimester of pregnancy. Qualitative analysis of transcripts revealed three main themes: (a) attitudes, (b) value of information, and (c) format. In addition, an electronic survey was developed and administered to 95 Geisinger OBGYN providers to assess their attitudes and opinions about the chatbot. Sixteen providers completed the electronic survey. The majority of patients and providers expressed favorable attitudes about the chatbot, recognizing it as an easy, quick, and user-friendly method to communicate important information about genetic testing. The accessible nature of chatbots offers a pragmatic and efficient approach for patients to receive important information about their genetic health
Patient and Provider Response to a Prenatal Pre-Visit Education Chatbot
Get PDFChatbots are artificial intelligence programs designed to mirror human conversation via text or speech and have quickly been integrated in medicine, including genomics and genetic counseling. Much of the literature has primarily focused on participants\u27 experiences and attitudes on the use of chatbots, with limited knowledge surrounding the perspectives and opinions of providers. Geisinger and Invitae co-developed a HIPAA-compliant prenatal pre-visit educational chatbot that provides routine patient education on genetic principles and genetic tests that are performed during the first and second trimester of pregnancy. Thirteen out of 310 patients who completed the chatbot were consented and interviewed to explore patients’ experiences. Patients were all females, with an average of at least one live birth, and an average age of 31 years. Twelve out of 13 patients who completed the phone interview reported that they were in their first trimester of pregnancy. Qualitative analysis of transcripts revealed three main themes: (a) attitudes, (b) value of information, and (c) format. In addition, an electronic survey was developed and administered to 95 Geisinger OBGYN providers to assess their attitudes and opinions about the chatbot. Sixteen providers completed the electronic survey. The majority of patients and providers expressed favorable attitudes about the chatbot, recognizing it as an easy, quick, and user-friendly method to communicate important information about genetic testing. The accessible nature of chatbots offers a pragmatic and efficient approach for patients to receive important information about their genetic health
Embodied Medicine: Integrating Dance/Movement Therapy into Physical Medicine & Rehabilitation
Get PDFPhysical medicine and rehabilitation (PM&R) is a field of medicine that addresses a variety of disorders impacting the brain, spinal cord, muscles, and bones. When approaching patient care, the goals of dance/movement therapists are similar to those of physiatrists, because both strive for a holistic approach to treatment that considers more than just physical ailments. Adding dance/movement therapy sessions in parallel with PM&R services would enhance the overall patient experience and quality of life. Previous studies that explore the use of dance/movement therapy with various neurodegenerative diseases, neuromuscular diseases, and sustained injuries are reviewed for potential application in PM&R settings. The benefits of dance/movement therapy for patient autonomy and body image are discussed, along with the inclusion of music and rhythm for emotional expression. This includes the delineation of prospective dance/movement therapy interventions and techniques for treating neurodegenerative diseases, neuromuscular diseases and sustained injuries in parallel with PM&R treatment. Future research should explore the quantitative impacts of dance/movement therapy on rehabilitation outcome measures, as well as the qualitative impacts of dance/movement therapy on patients’ mental and emotional welfare while undergoing PM&R treatment. The tailored integration of emotional, social, and cognitive therapeutic interventions directly alongside physical rehabilitation supports the healing process from multiple angles, which can promote better patient outcomes and satisfaction. Overall, physiatry and dance/movement therapy have separately helped so many people but developing a synergy between these fields has the potential to transform rehabilitative medicine
Gender and the Gender Spectrum in the Early Childhood Classroom
No full textFour panelists offer insights into supporting young children’s explorations of concepts of gender, their own gender identity, and the gender spectrum. The panelists represent a variety of backgrounds and expertise. Laleña Garcia is a kindergarten teacher and Gender and Sexuality trainer. She helps early childhood professionals and families create expansive and supportive understandings of gender, sexuality, relationships, and family structure. Her first children’s book, What We Believe, was published in 2020. Cassandra Santos is the lead teacher for the 5/6s class at the Early Childhood Center at Sarah Lawrence College. She has a passion for literature and has curated a gender inclusive collection of children’s literature for her classroom. She supports all of her students and their families to embrace an expansive view of gender. Marjorie Brickley is Faculty and Coordinator of the Infancy Institute at Bank Street Graduate School of Education. She is the Program Director of the Infant and Family Development and Early Intervention program, teaches courses in development and assessment, and is an advisor to fieldwork students. Margie also presents workshops to teachers, clinicians, and family child care providers. Margie’s current research projects focus on learning about the many ways to conceptualize child development; providing emotional support and resiliency training for teachers; applying recent research about gender to measuring Adverse Childhood Experiences in professionals working with young children; and applying recent research about gender. Brendan Cheney is a parent to two children, ages 10 and 7. Professionally, he works on housing and homelessness policy in New York City and has experience with the policy needs of homeless transgender youth. The panel is moderated by Jan Drucker, PhD, a Clinical Psychologist and SLC Psychology Faculty Emerita, co-founder of the Child Development Institute and longtime Director of the Empowering Teachers Program