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.

Evolving oncology provider perspectives on care delivery during the COVID-19 pandemic.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e18609-e18609
Author(s):  
Divya Ahuja Parikh ◽  
Meera Vimala Ragavan ◽  
Sandy Srinivas ◽  
Sarah Garrigues ◽  
Eben Lloyd Rosenthal ◽  
...  
Keyword(s):  
Cancer Care ◽  
Care Delivery ◽  
The United States ◽  
Advanced Practice ◽  
Curative Surgery ◽  
Time Points ◽  
Patients With Cancer ◽  
Provider Perspectives ◽  
Significant Difference ◽  
The Impact

e18609 Background: The COVID-19 pandemic prompted rapid changes in cancer care delivery. We sought to examine oncology provider perspectives on clinical decisions and care delivery during the pandemic and to compare provider views early versus late in the pandemic. Methods: We invited oncology providers, including attendings, trainees and advanced practice providers, to complete a cross-sectional online survey using a variety of outreach methods including social media (Twitter), email contacts, word of mouth and provider list-serves. We surveyed providers at two time points during the pandemic when the number of COVID-19 cases was rising in the United States, early (March 2020) and late (January 2021). The survey responses were analyzed using descriptive statistics and Chi-squared tests to evaluate differences in early versus late provider responses. Results: A total of 132 providers completed the survey and most were white (n = 73/132, 55%) and younger than 49 years (n = 88/132, 67%). Respondents were attendings in medical, surgical or radiation oncology (n = 61/132, 46%), advanced practice providers (n = 48/132, 36%) and oncology fellows (n = 16/132, 12%) who predominantly practiced in an academic medical center (n = 120/132, 91%). The majority of providers agreed patients with cancer are at higher risk than other patients to be affected by COVID-19 (n = 121/132, 92%). However, there was a significant difference in the proportion of early versus late providers who thought delays in cancer care were needed. Early in the pandemic, providers were more likely to recommend delays in curative surgery or radiation for early-stage cancer (p < 0.001), delays in adjuvant chemotherapy after curative surgery (p = 0.002), or delays in surveillance imaging for metastatic cancer (p < 0.001). The majority of providers early in the pandemic responded that “reducing risk of a complication from a COVID-19 infection to patients with cancer” was the primary reason for recommending delays in care (n = 52/76, 68%). Late in the pandemic, however, providers were more likely to agree that “any practice change would have a negative impact on patient outcomes” (p = 0.003). At both time points, the majority of providers agreed with the need for other care delivery changes, including screening patients for infectious symptoms (n = 128/132, 98%) and the use of telemedicine (n = 114/132, 86%) during the pandemic. Conclusions: We found significant differences in provider perspectives of delays in cancer care early versus late in the pandemic which reflects the swiftly evolving oncology practice during the COVID-19 pandemic. Future studies are needed to determine the impact of changes in treatment and care delivery on outcomes for patients with cancer.

Genetic counselors' perceptions of uncertainty in pretest counseling for genomic sequencing: A qualitative study

2019 ◽  
Vol 28 (2) ◽  
pp. 292-303 ◽  
Author(s):  
Jessica Park ◽  
Kimberly Zayhowski ◽  
Ainsley J. Newson ◽  
Kelly E. Ormond
Keyword(s):  
Qualitative Study ◽  
Genetic Counselors ◽  
Genomic Sequencing

scholarly journals SARS-CoV-2 genomes from Oklahoma, USA

2020 ◽  
Author(s):  
Sai Narayanan ◽  
John Corban Ritchey ◽  
Girish Patil ◽  
Narasaraju Teluguakula ◽  
Sunil More ◽  
...  
Keyword(s):  
Phylogenetic Analysis ◽  
The State ◽  
N Gene ◽  
Clinical Samples ◽  
Genomic Sequencing ◽  
Novel Mutations ◽  
Time Points ◽  
S Gene ◽  
Contagious Nature ◽  
Geographical Locations

Genomic sequencing has played a major role in understanding the pathogenicity of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). With the current pandemic, it is essential that SARS-CoV-2 viruses are sequenced regularly to determine mutations and genomic modifications in different geographical locations. In this study we sequenced SARS-CoV-2 from 5 clinical samples obtained in Oklahoma, USA during different time points of pandemic presence in the state. One sample from the initial days of the pandemic in the state and 4 during the peak in Oklahoma were sequenced. Previously reported mutations including D614G in S gene, P4715L in ORF1ab, S194L, R203K and G204R in N gene were identified in the genomes sequenced in this study. Possible novel mutations were also detected such as G1167V in S gene, A6269S and P3371S in ORF1ab, T28I in ORF7b, G96R in ORF8. Phylogenetic analysis of the genomes showed similarity to viruses from across the globe. These novel mutations and phylogenetic analysis emphasize the contagious nature of the virus.

Do emotional responses to food images differ within different types of eating disorders?

2018 ◽  
Vol 28 (2) ◽  
pp. 128-133
Author(s):  
Nasim Foroughi ◽  
Sloane Madden ◽  
Simon Clarke ◽  
Michael Kohn ◽  
Brooke Donnelly ◽  
...  
Keyword(s):  
Eating Disorders ◽  
Visual Analogue Scale ◽  
Food Consumption ◽  
Analogue Scale ◽  
Emotional Responses ◽  
Healthy Controls ◽  
Time Points ◽  
Different Types ◽  
Weight Restoration ◽  
Food Images

Objectives: To investigate emotional responses to food images in women with eating disorders (EDs) and healthy controls (HCs); and in underweight individuals post weight-restoration. Methods: Women (>14 years) with ( n = 139) and without ( n = 41) an ED rated food images evoking fear, disgust and happiness on a three-visual-analogue scale. Underweight participants viewed the images at two time-points; pre- and post-weight-restoration. Results: HCs were significantly happier, less fearful/anxious prior to viewing the images compared with EDs. Negative emotional responses when viewing images were significantly greater ( p < .001) in EDs compared with HCs; however, groups did not differ in happiness. Emotional responses were not significantly different within the ED groups. At post weight-restoration, individuals were significantly less anxious/disgusted when viewing the images. Conclusions: The importance of considering emotional responses when discussing food consumption in EDs trans-diagnostically is highlighted. Weight recovery reduces negative food responses, although responses remained high in comparison to HCs.

scholarly journals Factors Predicting Participation in the Prospective Genomic Sequencing Study, Total Cancer Care (TCC), in Kentucky

2020 ◽  
Author(s):  
McKayla J. Riggs ◽  
Bin Huang ◽  
Quan Chen ◽  
Therese Bocklage ◽  
Marissa R. Schuh ◽  
...  
Keyword(s):  
Cancer Care ◽  
Genomic Sequencing ◽  
Total Cancer

scholarly journals Engaging Patients in Precision Oncology: Development and Usability of a Web-Based Patient-Facing Genomic Sequencing Report

2020 ◽  
pp. 307-318 ◽  
Author(s):  
Ilana B. Solomon ◽  
Sarah McGraw ◽  
Jenny Shen ◽  
Adem Albayrak ◽  
Gil Alterovitz ◽  
...  
Keyword(s):  
Genetic Counseling ◽  
Focus Groups ◽  
Family Members ◽  
Return Of Results ◽  
Genomic Sequencing ◽  
Precision Oncology ◽  
Web Based ◽  
Genetic Literacy ◽  
Treatment Information ◽  
Genomic Results

PURPOSE Evidence-based somatic and germline sequencing has transformed cancer care and improves patient outcomes. However, patients’ low genetic literacy and misunderstanding of their own genomic results poses a threat to the realization of precision oncology. To optimize patient genomic comprehension, we developed a Web-based, patient-directed, genomic sequencing education and return-of-results tool, HOPE-Genomics. METHODS The HOPE-Genomics prototype included somatic and germline sequencing results, embedded multimedia genomic education, and interactive features (eg, request for genetic counseling). Between January and April 2018, we elicited feedback on tool usability and comprehensiveness through participant surveys, 4 focus groups of patients with cancer and their family members, and 3 provider focus groups (comprising 8 patients, 5 family members, and 19 providers). RESULTS We identified themes in patient/family tool-related responses, including the desire to view a patient-friendly report, a desire to receive multiple types of genomic information (eg, prognostic and uncertain), high acceptability of report content, and interest in tool-enabled access to genetic counseling. Major themes from the clinician focus groups included believing the tool could help patients formulate questions and facilitate patients’ communication of results to family members. However, there were diverse responses from all participants in terms of tool implementation (ie, timing and nature of report release). Some participants preferred report release before meeting with the provider, and others preferred it during the appointment. Additionally, some clinicians were concerned about providing prognostic and treatment information through the tool. CONCLUSION There was high acceptability and interest from patients, family members, and providers in a patient-directed genomics report. Future work will determine whether direct-to-patient reporting of genomic results improves patient knowledge, care engagement, and compliance with genomically guided interventions.

scholarly journals Testing personalized medicine: patient and physician expectations of next-generation genomic sequencing in late-stage cancer care

2013 ◽  
Vol 22 (3) ◽  
pp. 391-395 ◽  
Author(s):  
Fiona A Miller ◽  
Robin Z Hayeems ◽  
Jessica P Bytautas ◽  
Philippe L Bedard ◽  
Scott Ernst ◽  
...  
Keyword(s):  
Personalized Medicine ◽  
Late Stage ◽  
Cancer Care ◽  
Genomic Sequencing ◽  
Next Generation ◽  
Late Stage Cancer

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.

scholarly journals Early-stage economic analysis of research-based comprehensive genomic sequencing for advanced cancer care

2021 ◽  
Author(s):  
Deirdre Weymann ◽  
Janessa Laskin ◽  
Steven J. M. Jones ◽  
Robyn Roscoe ◽  
Howard J. Lim ◽  
...  
Keyword(s):  
Economic Analysis ◽  
Advanced Cancer ◽  
Cancer Care ◽  
Early Stage ◽  
Genomic Sequencing

Association of fear of COVID-19 with delays in care or treatment interruptions in patients with cancer.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 98-98
Author(s):  
Karen L. Smith ◽  
Nicole E. Caston ◽  
Valerie Lawhon ◽  
Kathleen D. Gallagher ◽  
Rebekah Angove ◽  
...  
Keyword(s):  
Cancer Care ◽  
Household Income ◽  
Patient Choice ◽  
Cancer Type ◽  
Health Issues ◽  
Time Points ◽  
Patients With Cancer ◽  
Treatment Interruptions ◽  
Time Point

98 Background: Patients with cancer are at risk for severe COVID-19 and may be vulnerable to health care delays. Delays or interruptions in care may lead to adverse cancer outcomes. Little is known about the relationship between fear of COVID-19 and disruptions in cancer care delivery. Methods: This longitudinal survey was distributed to individuals with cancer who received services July 2019-April 2020 from Patient Advocate Foundation, a non-profit organization that provides case management and financial aid to patients with chronic illness. Data was collected twice - early pandemic (5/20/20-7/11/20) and later pandemic (12/3/20-12/23/20). Fear of COVID-19 was assessed with the Fear of COVID-19 Scale and dichotomized as more (≥22) vs less (< 22) fearful. Respondents reported delays in care or treatment interruptions due to the pandemic and reasons for delays or interruptions. Respondents rated concern about potential long-term health issues due to delays on a 5-point Likert-like scale. We estimated predicted percentages and 95% confidence intervals (CI) using logistic regression models to assess the association of fear of COVID-19 (more vs less fearful) with delay in care or treatment interruption (any vs none) at each time point. We adjusted models for age, sex, race/ethnicity, region, annual household income, marital status, employment status, household size, Area Deprivation Index category, Rural-Urban Commuting Code category, county-level COVID-cases per 100,000, cancer type and number of comorbidities. Results: Amongst the 1,199 early pandemic survey respondents, the majority were female (72%), had household income < $48,000 (73%), and had ≥1 comorbidity (60%). 448 of the early pandemic survey respondents also completed the later survey. 464 (39%) and 166 (37%) respondents were categorized as more fearful at the early and later time points respectively. 567 (47%) and 191 (43%) reported delays or interruptions at the early and later time points respectively. The most common reported reasons for delays or interruptions were hospital/provider restrictions (early: 27%, later: 19%) and patient choice (early: 13%, later: 15%). Among respondents with delays or interruptions at each time point, > 70% were at least moderately concerned about potential long-term health issues due to delays. In adjusted models, more fearful respondents had higher predicted percentages of delayed care or treatment interruptions compared to less fearful respondents early (more fearful: 56%, 95% CI 39%-72%; less fearful: 44%; 95% CI 28%-61%) and later (more fearful: 55%, 95% CI 35%-73%; less fearful: 38%; 95% CI 22%-57%) in the pandemic. Conclusions: Fear of COVID-19 is common among patients with cancer and is linked with delays in care and treatment interruptions. System-wide strategies are needed to address fear of COVID-19 and to ensure equitable, timely, and safe access to cancer care throughout the pandemic.

Sign in / Sign up

Export Citation Format

Share Document