Allyse, Megan

Abstract A 2003 survey revealed the scope of mothers' dissatisfaction with their postnatal support following a diagnosis of Down syndrome (DS). Substantial proportions of mothers reported that providers conveyed diagnoses with pity, emphasized negative aspects of DS, and neglected to provide adequate materials explaining DS. This study follows up on the 2003 survey by assessing whether parents' experiences have improved. Four DS nonprofit organizations, which participated in the original study, distributed a mixed‐methods survey to families who have had children with DS between 2003 and 2022. Quantitative analysis assessed correlations among responses and differences between the 2003 and 2022 survey groups. Open‐ended responses were qualitatively analyzed. Compared to the 2003 findings, parents' perceptions of their postnatal care have not improved ( N = 89). Parents are increasingly likely to report that their providers pitied them, omitted positive aspects of DS, and provided insufficient materials describing DS. Substantial proportions of parents reported fear (77%) and anxiety (79%), only 24% described receiving adequate explanatory materials, and parents were 45% likelier to report that physicians discussed negative aspects of DS than positive aspects. Qualitatively, substantial numbers of parents recounted insensitive conduct by providers. These results suggest that despite interventions, parents' experiences of postnatal diagnoses of DS have not improved over time. Certain provider behaviors—such as describing positive aspects of DS and providing comprehensive explanatory materials—can reduce fear and anxiety, pointing to directions for reform.

AbstractObjectivesThirty‐five states, including Florida, now cover cell‐free DNA (cfDNA) screening of fetuses for all pregnant patients enrolled in state public insurance programs. We interviewed Black and Hispanic obstetric patients at a safety net clinic in Florida shortly after the state rolled out cfDNA as a first‐tier screening method for publicly insured patients.MethodsBlack and Hispanic patients receiving prenatal care from a prenatal or maternal fetal medicine clinic at a federally qualified health center in Jacksonville, FL were invited to participate in a qualitative interview in English or Spanish to explore experiences and perceptions of prenatal cfDNA screening. Participants were recruited following their first prenatal visit when cfDNA is typically introduced. Interview transcripts were qualitatively analyzed for iterative themes based on principles of grounded theory.ResultsOne hundred Black and Hispanic patients (n = 51 non‐Hispanic Black, n = 43 Hispanic, n = 3 Hispanic Black, n = 3 Not Reported/Other) completed an interview. Participants described minimal opportunity for pre‐screening counseling and limited health literacy about cfDNA or its uses. Some believed that cfDNA could positively impact pregnancy health. Many were unsure if they had received cfDNA even though they were aware of the information provided by it. Most participants expressed an interest in cfDNA as a means for early detection of fetal sex and as an additional indication of general fetal health.ConclusionsPatient experiences indicate limited informed consent and decision‐making for cfDNA, discordant with professional guidelines on pre‐screen counseling. Our findings suggest that there should be additional investment in implementing cfDNA in safety net settings to ensure that patients and providers receive the support necessary for effective patient counseling and follow‐on care for the ethical implementation of cfDNA.

Abstract Background: Individuals from diverse racial/ethnic and disadvantaged backgrounds are underrepresented in cancer clinical trials, compounding the difficulty of adequately understanding, addressing, and reversing health inequities. Social determinants of health (SDOH) factors likely contribute to disparities in cancer trial enrollment. While the presence of SDOH has shown to be associated with clinical trial participation, few studies have explored the role of SDOH in shaping beliefs around the benefits of clinical trials. Thus, this study aims to identify SDOH factors associated with beliefs around the benefits of clinical trial participation. Methods: This is a cross-sectional study of data from the Community Health Assets and Resilience Measures survey. The survey was administered in Fall 2021 to community members (N=3593; 98% > 50 years of age, 68% male, 52% racial/ethnic minority) residing in three states within the Mayo Clinic catchment area. Survey items assessed SDOH factors including financial instability, childcare, transportation, food insecurity, safety, literacy, social isolation, and perceived discrimination. Participant beliefs around the benefits of clinical trial participation was measured by rating level of agreement to 4 statements: ‘People in my community can benefit from participating in clinical trials’, ‘Participation in clinical trials benefits society’, ‘Participation in clinical trials is risky’, ‘I would personally benefit’, and ‘People in my community would benefit’. Response options were dichotomized as ‘agree’ and ‘disagree’ and adjusted stepwise logistic regression analyses were performed to assess factors associated with beliefs about clinical trials. Results: Race/ethnicity was significantly associated with all beliefs with Indigenous populations being significantly more likely to agree that people in their community could benefit from clinical trials, clinical trials benefit society, participation in clinical trials is risky, and that they would personally benefit. In adjusted analyses, financial instability, food insecurity, transportation, childcare, safety, social isolation, literacy, and discrimination were significantly associated with beliefs about the benefits of clinical trial participation. Neighborhood safety was most strongly associated with the belief that ‘People in my community can benefit from participating in clinical trials’ and ‘I would personally benefit from clinical trials’. Health literacy was most strongly associated with the belief that clinical trials benefit society and the community. Finally, the experience of 'people act as if they think you are not smart' (discrimination) was most strongly associated with the belief that clinical trials are risky. Conclusion: Clinical trials are the cornerstone to advancing equitable cancer care. Innovative, multifaceted, community-driven strategies are needed that address negative beliefs around the benefits of clinical trial participation to address existing recruitment and retention shortcomings. Citation Format: Jessica D. Austin, Todd Huschka, Amelia Barwise, Megan Allyse, Sean Phelan. The role of social determinants of health on beliefs around the benefits of clinical trials [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A077.

Abstract Black women experience significant disparities in morbidity and mortality related to hereditary breast and ovarian cancer (HBOC). Early identification of women with HBOC is essential for proactive screening and timely diagnosis but evidence suggests that Black women receive genetic testing for HBOC at lower rates than their White counterparts. To understand Black women’s perspectives on HBOC genetic testing and potential factors influencing this decision, we conducted in-depth qualitative interviews with 107 Black women with a personal or family history of breast or ovarian cancer. Participants were recruited via the networks of patient support organizations and sororities as well as at a family medicine safety net clinic in Jacksonville, FL. Participants frequently expressed a lack of awareness about their family cancer history; many cancer patients stated that they only became aware of extensive family history upon their own diagnosis. Lack of family history sharing was attributed to a culture of silence around medical issues and a desire to protect family members from difficult information. However, most participants indicated a strong desire to understand their own risk of HBOC and were interested in genetic testing. Participants with a personal diagnosis were motivated to undergo HBOC genetic testing to reduce the risk for future generations. Clinical experiences with the offer of HBOC genetic testing were variable, with a few expressing that they had to make repeated inquiries from a provider to understand the relevance of the test to their own health. These findings suggest that investigation into alternative clinical modalities to collect family health history may be beneficial to identify Black women who meet NCCN Guidelines for HBOC testing. In contrast to the literature suggesting hesitancy for HBOC genetic testing, many participants perceived genetic results as having a positive impact for their medical decision-making and family's health. The development of patient materials and provider education on cultural and social factors that influence the uptake of HBOC genetic testing is also needed. Citation Format: Kirsten A. Riggan, Michele Halyard, Sarah E. James, Marion Kelly, Daphne Phillips, Megan A. Allyse. Perceptions and experiences of Black women on hereditary breast and ovarian cancer genetic testing [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A067.

Background For individuals living with chronic conditions like diabetes mellitus and obesity, there is a need for sustainable behavioral strategies and physiologic tools. These tools support identifying and addressing barriers to healthy eating, reducing body mass index (BMI), and building increased physical resilience in real time. Objective To evaluate whether a 12-week learning management system designed to combine nutritional intervention with education and coaching on improving emotional intelligence (EI) could alter cardiometabolic outcomes. Methods This pre-post prospective study enrolled 37 adult volunteers with BMI greater than 25 to participate in a 12-week learning management system. Primary (BMI, systolic blood pressure, diastolic blood pressure, low-density lipoprotein [LDL], high-density lipoprotein, and fasting glucose levels) and secondary self-reported outcomes were assessed at baseline, 12 weeks, and 6 months after enrollment using Short Form-36, Emotional Quotient Inventory (EQi), and Whole Health Index (WHI). Linear mixed-effects regression models with random effect were used to estimate changes in primary and secondary outcomes. We adjusted for multiple testing using Holm step-down method. Results BMI and LDL were the only primary endpoints lower at program completion and 6-month follow-up compared to baseline levels (−1.63 and −17.77 mg/dL, respectively; P < .001). Secondary outcomes showing statistically significant improvement from baseline to 6-month follow-up included energy/fatigue (Short Form-36), self-regard (EQi), decision-making (EQi), impulse control (EQi), stress management (EQi), Whole Brain – Form A (WHI), Whole Food – Form C (WHI), and Whole Body – Form D (WHI). Conclusion This study provides preliminary evidence that lifestyle programs combining nutritional interventions and EI can have a significant impact on BMI and LDL. Our study highlights the potential importance of both nutrition and EI in programs targeting diet and lifestyle modification.

Objectives In 2018, the Healing Emotional Lives of Peers (HELP) Program was implemented at Mayo Clinic Rochester to guide healthcare professionals (HCPs) after a second victim experience, such as adverse patient events or medical errors. The HELP program was expanded to all HCPs in response to the anticipated stressors of the COVID-19 pandemic. This article aims to describe the rapid expansion of the peer support program and evaluate the effectiveness of peer support provided to affected colleagues (ACs). Methods Quantitative data collected from workshop evaluations, activations, and associated metrics (TPS Self-Assessment, Encounter Form, and AC Self-Assessment) were summarized through standard descriptive statistics using SAS version 9.4 software. Open-ended responses were qualitatively analyzed for iterative themes about the HELP program and associated workshops. Results Between April 2020 and December 2021, 22 virtual workshops to train peer supporters were conducted with 827 attendees. Of these, 464 employees completed the workshop evaluation. A total of 94.2% rated the workshop as excellent or very good. Participants perceived the workshop to be highly effective and felt more prepared to support ACs. Between May 2020 and December 2021, 247 activations were submitted through the HELP Program’s intranet Web site and peer support was requested for 649 employees. Of the 268 TPS Self-Assessments, 226 (84.3%) felt that they provided helpful support to an AC. One hundred ACs evaluated support received, with 93% being “extremely” or “very satisfied.” Affected colleagues appreciated having a TPS provide judgment-free support. Conclusions The HELP Program promotes a culture of safety by helping HCPs process traumatic events. To effectively meet the needs of patients, healthcare organizations need to prioritize the well-being of their employees through interpersonal support.

There is growing recognition that clinical and nonclinical healthcare professionals may become “second victims” following adverse patient events, medical errors, or patient-related injuries. In addition to the trauma-associated symptoms experienced by second victims, unprocessed second victim experience (SVE) can lead to burnout and leaving the healthcare workforce. To better understand the risk factors and support needs of affected healthcare professionals after a SVE, we conducted in-depth qualitative interviews with twelve staff in obstetrics & gynecology and pediatrics at a large academic medical institution in the upper Midwest of the U.S. Several participants indicated that it was not the patient outcome itself that precipitated the SVE, but associated factors such as moral distress or communication challenges. Participants discussed the role of their work unit culture in post-SVE processing, expressing that units perceived as blame-seeking or where adverse events were not openly discussed, hindered their recovery. While desired support mechanisms were individualized, participants stressed the importance of immediate and proactive support, such as through a peer support program, and long-term support mechanisms for lingering symptoms. As attrition of the healthcare workforce continues to be a significant concern, it is essential that we understand and meet the post-SVE support needs of affected staff, to promote holistic care following adverse patient events.

AbstractBackgroundIt has yet to be fully elucidated how differing populations of obstetric patients adapted to the disruptions in perinatal care and postpartum support from the COVID‐19 pandemic. We surveyed an enriched sample of socioeconomically advantaged patients to understand the influence of COVID‐19 on their perinatal care experience, well‐being, and coping.MethodsWe surveyed pregnant and postpartum patients (n = 6140) at a large academic medical center in the Midwest of the United States using the Coronavirus and Perinatal Experiences instrument in Spring 2021.ResultsThe survey was sent to 6141 pregnant and postpartum patients; 1180 (17.8%) respondents completed the survey, including 256 who were pregnant and 834 postpartum. Most pregnant patients experienced no changes in their prenatal care with 16.5% indicating somewhat worsened care. In the postpartum cohort, 37.5% stated their care had somewhat worsened. In describing influences on stress and mental health, 58.1% of postpartum respondents stated it was moderately, and 17.4% significantly, worse. The pandemic had a somewhat or moderately negative influence for 72.7% of respondents, with 11.0% stating these effects were extremely negative. Both cohorts characterized a range of coping strategies, most commonly, talking with friends and family (76.3%).Conclusion(s)Even among this sample of socioeconomically advantaged patients, respondents indicated that the pandemic disrupted many facets of their medical care and daily life, especially social activities and postpartum support. Our findings suggest that counseling on coping and adaptation strategies for stressors and increased health systems support be part of perinatal care during public health emergencies for all demographic groups.