scholarly journals Genomic Sequencing Results Disclosure in Diverse and Medically Underserved Populations: Themes, Challenges, and Strategies from the CSER Consortium

2021 ◽  
Vol 11 (3) ◽  
pp. 202
Author(s):  
Sabrina A. Suckiel ◽  
Julianne M. O’Daniel ◽  
Katherine E. Donohue ◽  
Katie M. Gallagher ◽  
Marian J. Gilmore ◽  
...  
Keyword(s):  
Underserved Populations ◽  
Evidence Base ◽  
Medically Underserved ◽  
Genomic Sequencing ◽  
Conference Calls ◽  
Community Stakeholders ◽  
Results Disclosure ◽  
Genomic Results ◽  
Unexpected Findings ◽  
Challenges And Strategies

Genomic sequencing results need to be effectively communicated across all populations and practice settings. Projects in the Clinical Sequencing Evidence-Generating Research (CSER) consortium enroll diverse racial/ethnic and medically underserved participants across various clinical contexts. This article explores a set of CSER results disclosure cases to expand the evidence base on experiences returning genomic results. Case details were collected using a structured set of questions. We identified common themes in the case set, and assessed challenges and strategies in achieving six relevant results disclosure objectives. CSER-affiliated patient/community stakeholder impressions of the findings were solicited via video conference calls. Seventeen cases across six CSER projects were included. Case themes sorted into four categories: (1) factors influencing participant understanding, (2) participant emotional response, (3) disease burden, and (4) logistical challenges. Challenges meeting results disclosure objectives included a lack of dialogue, health literacy level, unexpected findings, and complex concepts. Strategies were consistent with traditional genetic counseling practice, but also highlighted approaches being evaluated in CSER projects. Patient/community stakeholders supported the identified themes and provided additional suggestions to improve patient understanding and engagement. These experiences add valuable insights into adapting genomic results disclosure practices to best serve all patient populations.

Genomic sequencing results disclosure in diverse and underserved populations: themes, challenges and strategies from the CSER Consortium

2021 ◽  
Vol 132 ◽  
pp. S201-S203
Author(s):  
Laura Amendola ◽  
Sabrina A. Suckiel ◽  
Julianne O’Daniel ◽  
Katherine Donohue ◽  
Katie Gallagher ◽  
...  
Keyword(s):  
Underserved Populations ◽  
Genomic Sequencing ◽  
Results Disclosure ◽  
Challenges And Strategies

scholarly journals Pediatric Oncologists’ Experiences Returning and Incorporating Genomic Sequencing Results into Cancer Care

2021 ◽  
Vol 11 (6) ◽  
pp. 570
Author(s):  
Rebecca L. Hsu ◽  
Amanda M. Gutierrez ◽  
Sophie K. Schellhammer ◽  
Jill O. Robinson ◽  
Sarah Scollon ◽  
...  
Keyword(s):  
Cancer Care ◽  
Cancer Genomics ◽  
Emotional Responses ◽  
Genetic Counselors ◽  
Genomic Sequencing ◽  
Uncertain Information ◽  
Time Points ◽  
Genomic Results

Pediatric oncologists’ perspectives around returning and incorporating tumor and germline genomic sequencing (GS) results into cancer care are not well-described. To inform optimization of cancer genomics communication, we assessed oncologists’ experiences with return of genomic results (ROR), including their preparation/readiness for ROR, collaboration with genetic counselors (GCs) during ROR, and perceived challenges. The BASIC3 study paired pediatric oncologists with GCs to return results to patients’ families. We thematically analyzed 24 interviews with 12 oncologists at two post-ROR time points. Oncologists found pre-ROR meetings with GCs and geneticists essential to interpreting patients’ reports and communicating results to families. Most oncologists took a collaborative ROR approach where they discussed tumor findings and GCs discussed germline findings. Oncologists perceived many roles for GCs during ROR, including answering families’ questions and describing information in lay language. Challenges identified included conveying uncertain information in accessible language, limits of oncologists’ genetics expertise, and navigating families’ emotional responses. Oncologists emphasized how GCs’ and geneticists’ support was essential to ROR, especially for germline findings. GS can be successfully integrated into cancer care, but to account for the GC shortage, alternative ROR models and access to genetics resources will be needed to better support families and avoid burdening oncologists.

scholarly journals Telemedicine Services During COVID‐19: Considerations for Medically Underserved Populations

2020 ◽  
Vol 37 (1) ◽  
pp. 231-234 ◽  
Author(s):  
Tasha Woodall ◽  
Melinda Ramage ◽  
John T. LaBruyere ◽  
William McLean ◽  
Casey R. Tak
Keyword(s):  
Underserved Populations ◽  
Medically Underserved ◽  
Medically Underserved Populations

scholarly journals Eliciting Requirements for a Diabetes Self-Management Application for Underserved Populations: A Multi-Stakeholder Analysis

2021 ◽  
Vol 19 (1) ◽  
pp. 127
Author(s):  
Samuel Bonet Olivencia ◽  
Arjun H. Rao ◽  
Alec Smith ◽  
Farzan Sasangohar
Keyword(s):  
Information Exchange ◽  
Underserved Populations ◽  
Healthcare Providers ◽  
Data Entry ◽  
Medically Underserved ◽  
Self Management ◽  
Educational Content ◽  
Underserved Communities ◽  
Design Requirements ◽  
Survey Interviews

Medically underserved communities have limited access to effective disease management resources in the U.S. Mobile health applications (mHealth apps) offer patients a cost-effective way to monitor and self-manage their condition and to communicate with providers; however, current diabetes self-management apps have rarely included end-users from underserved communities in the design process. This research documents key stakeholder-driven design requirements for a diabetes self-management app for medically underserved patients. Semi-structured survey interviews were carried out on 97 patients with diabetes and 11 healthcare providers from medically underserved counties in South Texas, to elicit perspectives and preferences regarding a diabetes self-management app, and their beliefs regarding such an app’s usage and utility. Patients emphasized the need for accessible educational content and for quick access to guidance on regulating blood sugar, diet, and exercise and physical activity using multimedia rather than textual forms. Healthcare providers indicated that glucose monitoring, educational content, and the graphical visualization of diabetes data were among the top-rated app features. These findings suggest that specific design requirements for the underserved can improve the adoption, usability, and sustainability of such interventions. Designers should consider health literacy and numeracy, linguistic barriers, data visualization, data entry complexity, and information exchange capabilities.

scholarly journals Increasing uptake of colon cancer screening in a medically underserved population with the addition of blood-based testing

2020 ◽  
Author(s):  
Stephanie Ioannou ◽  
Kyle Sutherland ◽  
Daniel A. Sussman ◽  
Amar R. Deshpande
Keyword(s):  
Colon Cancer ◽  
Cancer Screening ◽  
Underserved Populations ◽  
Colon Cancer Screening ◽  
Medically Underserved ◽  
Screening Methods ◽  
Medically Underserved Populations ◽  
Medically Underserved Population ◽  
The Impact

Abstract Adherence to colorectal cancer screening is suboptimal, particularly in medically underserved populations. We report here on our assessment of the impact of offering a blood-based screening test on screening rates in a health fair setting. Patients attending student-run health fairs who met colon cancer screening guideline eligibility criteria received a recommendation to attend that screening station. Patients were offered recommended accepted screening methods, and if they declined they were offered blood-based testing. Screening rates, test outcomes, and the rate of follow up completion of colonoscopy were measured and compared with historic screening outcomes. Of 1401 screening eligible patients, 640 (45.7%) attended the colon cancer screening station, of whom 460 were eligible for assessment. Amongst these, none selected colonoscopy, 30 (6.5%) selected FIT, and 430 (93.5%) selected blood-based testing. Only 2 patients returned the FIT. For the blood test, 88 were positive, and 20 of these received a follow up colonoscopy. Based on this assessment, blood-based testing is an effective method to increase screening rates in medically underserved populations, though efforts to further improve access to follow up colonoscopy are necessary.

scholarly journals 948: Addressing medically-underserved populations through a maternal-fetal transport system

2018 ◽  
Vol 218 (1) ◽  
pp. S562
Author(s):  
Joshua I. Rosenbloom ◽  
D. Michael Nelson ◽  
Scott Saunders ◽  
F. Sessions Cole ◽  
George A. Macones ◽  
...  
Keyword(s):  
Transport System ◽  
Underserved Populations ◽  
Medically Underserved ◽  
Medically Underserved Populations
Sign in / Sign up

Export Citation Format

Share Document