scholarly journals Uptake and Patient Perspectives on Additional Testing for Novel Disease-Associated Genes: Lessons from a PAH Cohort

Genes ◽  
2021 ◽  
Vol 12 (10) ◽  
pp. 1540
Author(s):  
Samara M. A. Jansen ◽  
Lieke M. van de Heuvel ◽  
Arjan C. Houweling ◽  
J. Peter van Tintelen ◽  
Frances S. de Man ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Lessons Learned ◽  
Patient Perspectives ◽  
Survey Study ◽  
Group 13 ◽  
Contact Group ◽  
Psychosocial Impacts ◽  
Pulmonary Arterial ◽  
Disease Associated Genes ◽  
Prior Analysis

Background: Pulmonary arterial hypertension (PAH) has an identifiable genetic cause in 5% of all PAH cases. Due to health benefits conferred by the early detection of PAH and the recent identification of additional PAH-associated genes, we decided to offer (extended) genetic testing to all incident and prevalent idiopathic PAH (iPAH) and pulmonary veno-occlusive disease (PVOD) patients in our clinic. Here, we report the lessons learned from (re-)contacting iPAH/PVOD patients concerning the uptake and analysis of identified PAH-associated genes and patient perspectives of the approach. Methods: Between January 2018 and April 2020, all iPAH/PVOD patients who were not previously genetically tested (contact group) and those who tested negative on prior analysis of BMPR2 and SMAD9 variants (re-contact group) were (re-)contacted for (additional) genetic testing. Results: With our approach, 58% of patients (84 out of 165) opted for genetic counselling, and a pathogenic variant was found in 12% of cases (n = 10) (re-contact group, 11%, and contact group, 13%). Eighty-six percent of participants of the survey study appreciated being (re-)contacted for genetic testing. Mild psychosocial impacts were observed. Conclusions: Our report shows the importance of (re-)contact and interest of patients (as indicated by the uptake, mild psychosocial impact and appreciation) in PAH.

Benefits and Challenges of Using Virtual Primary Care During the COVID-19 Pandemic: An International Cross-sectional Survey Study (Preprint)

2021 ◽  
Author(s):  
Edmond Li ◽  
Rosy Tsopra ◽  
Geronimo Jimenez ◽  
Alice Serafini ◽  
Gustavo Gusso ◽  
...  
Keyword(s):  
Primary Care ◽  
Care Delivery ◽  
Lessons Learned ◽  
Survey Study ◽  
Free Text ◽  
Cross Sectional Survey ◽  
Online Questionnaire ◽  
Cross Sectional ◽  
Face To Face ◽  
Remote Care

BACKGROUND With the onset of COVID-19, general practitioners (GPs) and patients worldwide swiftly transitioned from face-to-face to digital remote consultations. There is a need to evaluate how this global shift has impacted patient care, healthcare providers, patient and carer experience, and health systems. OBJECTIVE We explored GPs’ perspectives on the main benefits and challenges of using digital remote care. METHODS GPs across 20 countries completed an online questionnaire between June – September 2020. GPs’ perceptions on main barriers and challenges were explored using free-text questions. Thematic analysis was used to analyse the data. RESULTS A total of 1,605 respondents participated in our survey. The benefits identified included reducing COVID-19 transmission risks, guaranteeing access and continuity of care, improved efficiency, faster access to care, improved convenience and communication with patients, greater work flexibility for providers, and hastening the digital transformation of primary care and accompanying legal frameworks. Main challenges included patient’s preference for face-to-face consultations, digital exclusion, lack of physical examinations, clinical uncertainty, delays in diagnosis and treatment, overuse and misuse of digital remote care, and unsuitability for certain types of consultations. Other challenges include the lack of formal guidance, higher workloads, remuneration issues, organisational culture, technical difficulties, implementation and financial issues, and regulatory weaknesses. CONCLUSIONS At the frontline of care delivery, GPs can provide important insights on what worked well, why, and how during the pandemic. Lessons learned can be used to inform the adoption of improved virtual care solutions, and support the long-term development of platforms that are more technologically robust, secure. INTERNATIONAL REGISTERED REPORT RR2-10.2196/30099

Oncologists’ perceptions of rounding alongside palliative care physicians: Results of a post-intervention survey study.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. e20674-e20674 ◽  
Author(s):  
Thomas William LeBlanc ◽  
James A Tulsky ◽  
Amy Pickar Abernethy ◽  
Christopher A Jones ◽  
Anthony N Galanos ◽  
...  
Keyword(s):  
Palliative Care ◽  
Solid Tumor ◽  
Hospice Care ◽  
Care Physician ◽  
Lessons Learned ◽  
Survey Study ◽  
Post Intervention ◽  
New Model ◽  
Oncology Service ◽  
Palliative Care Physician

e20674 Background: In August 2011, a new rounding model was instituted on the inpatient solid tumor oncology service at Duke. This model incorporated a palliative care physician as a second attending on service, alongside the rounding solid tumor oncologist. We sought to assess the oncologists’ perceptions of this model, and of palliative care, 1 year later. Methods: We developed a 15-item survey assessing 3 domains: (1) perceptions about palliative care in general, (2) lessons learned from palliative care colleagues, if any, and (3) changes in the experience of rounding on the solid tumor oncology service. Faculty were invited to participate by e-mail, via an anonymous web link. All oncology faculty who rounded at least 2 weeks since August 2011 were included. Results: Response rate was 73% (8 of 11). 75% (N=6) of respondents had rounded both before and after the new model was instituted. 75% reported a more positive perception of palliative care (N=6), 88% (N=7) reported learning new ways to manage cancer patients’ symptoms, and 100% agreed that the palliative care physician brings a valuable skill set to the team. Only 1 respondent felt that palliative care physicians detract from oncologic issues, and none thought the palliative care physicians discuss hospice too early. 88% (N=7) reported greater willingness to round on the service under the new model, and 100% agreed that rounding was more enjoyable since the addition of the palliative care attending to the team. 100% agreed that palliative care is a necessary component of comprehensive cancer care, and that palliative care should have a presence in the outpatient cancer clinics; 88% (N=7) reported feeling comfortable doing palliative care in their own clinical practice. All agreed that “palliative care” is different from “hospice care.” Conclusions: Rounding alongside palliative care physicians on an inpatient oncology service may improve oncologists’ perceptions of palliative care, teach them new symptom management skills, and improve their willingness to do inpatient rounding. Fears about palliative care physicians inappropriately introducing hospice too early for patients with solid tumors may be unfounded.

A comparison of patients' and physicians' expectations regarding precision oncology tests.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 1568-1568
Author(s):  
Navdeep Dehar ◽  
Tasnima Abedin ◽  
Patricia A. Tang ◽  
D. Gwyn Bebb ◽  
Winson Y. Cheung
Keyword(s):  
Decision Making ◽  
Genetic Testing ◽  
Cancer Biology ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Survey Study ◽  
Precision Oncology ◽  
Diagnosis And Prognosis ◽  
Genetic Test Results ◽  
Survey Responses

1568 Background: With the increasing number and frequency of biomarker and genetic tests that are offered to patients with cancer, it is important to ensure that they fully understand the implications of these tests. In this survey study, we aimed to compare the attitudes and expectations of patients and cancer physicians about the role of biomarker and genetic testing in clinical decision-making. Methods: Two separate, complimentary, self-administered questionnaires for cancer patients and their physicians, respectively, were collected in Calgary, Alberta, Canada. Survey responses from patients were subsequently matched with those of their corresponding oncologists to form patient–oncologist dyads. We determined the concordance rates between responses of patients and those of their oncologists. Results: A total of 113 patients and 15 physicians participated in the study from July to September 2019. Patients demonstrated good understanding of general cancer biology (79%) and diagnostic processes (91%) associated with precision oncology. About 70% patients were willing to undergo minor procedures, and participate in research involving biomarker or genetic testing; however, this was over-estimated by their physicians in 82% of cases. Many patients felt that their tumor should be tested to guide treatment (70%) and were not bothered by potential delays in treatment due to testing (23%). These views from patients were largely shared by their oncologists (concordance 64%). While only 28% patients thought that they had enough knowledge to make informed decisions, majority (68%) said that they needed more information. Importantly, knowledge and expectations regarding the applications of biomarker or genetic test results on actual diagnosis and prognosis were grossly discrepant between patients and their oncologists (concordance 26% and 36%, respectively). Conclusions: Patients and cancer physicians tend to be aware of the advances in precision oncology and are willing to participate in biomarker and genetic testing and research. However, they do not consistently agree about the roles and applications of these tests, which may result in misplaced expectations. Strategies to improve education and communication are needed to align these expectations and improve the quality of clinical decision-making.

scholarly journals Older Adults and the Impact of COVID-19: Lessons Learned from a Two-State Study

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 724-725
Author(s):  
Amanda Sokan ◽  
Tracy Davis
Keyword(s):  
Older Adults ◽  
Family Cohesion ◽  
Emotional Health ◽  
Aging Population ◽  
Well Being ◽  
Lessons Learned ◽  
State Study ◽  
Psychosocial Impacts ◽  
Household Environment ◽  
The Impact

Abstract The COVID-19 pandemic has led to increased strains on the rapidly increasing aging population’s mental, emotional, and physiological health. COVID-19, which belongs to a family of respiratory viruses, was first detected in China before spreading to other parts of the globe. Due to underlying health conditions and weakened immune systems, the aging population is at greater risk for contracting COVID-19. To better prepare for a future pandemic, it is necessary to explore the psychosocial impacts of limited human interactions to make the aging population feel safer while mitigating harm to their mental and emotional health. The purpose of this study is to highlight the experiences of the aging population with COVID-19, including psychosocial, behavioral responses to the pandemic, and older adults’ overall well-being. We surveyed a total of 203 adults 55 and older regarding their experiences with the pandemic. Survey components included the COVID-19 Household Environment Scale (Behar-Zusman, Chavez, & Gattamorta, ND), selected items from the COVID-19 Impact Study and open-ended questions, the Generalized Anxiety Disorder Assessment (Williams et al., 2006), and the UCLA Loneliness Scale (Russell, Peplau, & Ferguson, 1978). Preliminary analyses indicate that most participants had not experienced any COVID-19 symptoms, nor did they know anyone who had passed away from the virus. However, participants did report loneliness and less family cohesion because of the pandemic. Findings from this study will be used to help older adults cope with the impact of the current pandemic and future pandemics.

scholarly journals Recruitment, Enrollment, and Retention: Creative Techniques to Overcome Obstacles

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 210-210
Author(s):  
Justine Sefcik ◽  
Darina Petrovsky
Keyword(s):  
Older Adults ◽  
Clinical Trial ◽  
Cognitive Impairment ◽  
Longitudinal Study ◽  
Research Participation ◽  
Amnestic Mild Cognitive Impairment ◽  
Lessons Learned ◽  
Survey Study ◽  
Incentive Payment ◽  
The Third

Abstract The process of recruiting, enrolling, and retaining older adults in research studies has been challenging, even prior to the COVID-19 pandemic. This symposium presents research conducted and lessons learned on recruiting, enrolling, and retaining older adults, including those with cognitive impairment. Insights are provided on what techniques are most beneficial for improving rates of research participation, spanning time prior to and during the pandemic. The first presentation reports on qualitative perspectives of persons living with dementia and their caregivers as to what helped them decide to enroll into a clinical trial together. The second presentation speaks to how variations in incentive payment allocations played a role in consent decisions of patients with amnestic mild cognitive impairment and their study partners. The third presentation discusses the effectiveness of an adapted framework and strategies to increase the recruitment and retention of older Latinos with Alzheimer’s Disease and Related Dementias (ADRD) into a clinical trial. The fourth presentation shares techniques for recruiting older adults for a survey study during the pandemic. The fifth presentation defines challenges during a longitudinal study when the pandemic and other natural disasters occurred and strategies for success. Taken together, these presentations will inform researchers on techniques that could be used to improve recruitment, enrollment, and retention of older adults in clinical research.

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