Jessica L. Thomas’s research while affiliated with Ann & Robert H. Lurie Children's Hospital of Chicago and other places

Background Receiving a diagnosis of cancer is a profound and often very stressful experience. Few studies have prospectively recruited patients prior to receiving a new diagnosis of cancer and included spouses or partners. Objective The aim of the Couples Cope Study is to understand the impact of undergoing a diagnostic biopsy and receiving a new cancer diagnosis on quality of life (QoL) in both patients and their spouses or partners, as well as on the quality of their relationship. This protocol paper describes the study design and assesses the feasibility of recruitment and retention. Methods Study staff reviewed the schedules of collaborating physicians using specific encounter codes to identify patients scheduled for breast or prostate biopsies. Potential participants were prescreened via the electronic health record and sent a recruitment letter at least 2 to 3 weeks prior to their biopsy procedure. Patients subsequently underwent a phone screening to determine eligibility. Patients who enrolled provided study staff with contact information for their spouses or partners. All consent forms were completed online. Surveys were completed online prior to receiving the biopsy results (baseline), and at 1, 3, 6, and 9 months after the biopsy. Study staff engaged in ongoing, personalized contact with participants and sent assessment completion reminders via phone and email. Results A total of 2294 patients undergoing a breast or prostate biopsy were identified and 69% (n=1582) were eligible for phone screening following electronic health record prescreening. Of the 431 patients who underwent phone screening, 75% (n=321) were eligible to participate. Of the eligible patients, 72% (n=231) enrolled and 82% (n=190) of enrolled patients had an accompanying partner or spouse who also enrolled. A total of 77% (34/44) of patients who received a cancer diagnosis and 72% (26/36) of their spouses or partners were retained through 9 months, while 80% (53/66) of patients who received a benign diagnosis and 68% (42/62) of their partners were retained. Conclusions Prospective recruitment of patients undergoing diagnostic biopsy and their partners is feasible and requires both strategic collaboration with providers and concerted prescreening and recruitment efforts by study staff. Importantly, this study was able to conduct all study activities online without disrupting clinical workflow and without requiring patients and their spouses or partners to come into the laboratory. Consideration should be given to the ratio of biopsies to cancer diagnoses, which can vary significantly by cancer type. Prospective studies are needed and can inform our ability to provide effective support earlier to couples facing a possible cancer diagnosis. Future studies should examine other tumor types that have received less attention in QoL studies, include behavioral and neurobiological assessments beyond self-report measures, and follow couples beyond 9 months in order to examine long-term effects on QoL. International Registered Report Identifier (IRRID) DERR1-10.2196/52361

We sought to analyze the relationship between health literacy, confidence in COVID-19 vaccines, and self-reported vaccination. We hypothesized that the relationship between health literacy and vaccination would be mediated by vaccine confidence. We recruited (N = 271) English- and Spanish-speaking adults in Boston and Chicago from September 2018 to September 2021. We performed a probit mediation analysis to determine if confidence in COVID-19 vaccines and health literacy predicted self-reported vaccination. We hypothesized that the relationship between health literacy and vaccination would be mediated by vaccine confidence. Participants were on average 50 years old, 65% female, 40% non-Hispanic Black, 25% Hispanic, and 30% non-Hispanic White; 231 (85%) reported at least one COVID-19 vaccination. A higher mean vaccine confidence score (t = −7.9, p < 0.001) and higher health literacy (t = −2.2, p = 0.03) were associated with vaccination, but only vaccine confidence predicted vaccination in a multivariate model. Vaccine confidence mediated the relationship between health literacy and COVID-19 vaccination (mediated effects: 0.04; 95% CI [0.02, 0.08]). We found that using a simple tool to measure vaccine confidence identified people who declined or delayed COVID-19 vaccination in a diverse sample of adults with varying levels of health literacy. Simple short survey tools can be useful to identify people who may benefit from vaccine promotion efforts and evidence-based communication strategies.

BACKGROUND Receiving a diagnosis of cancer is a profound and often very stressful experience. Few studies have prospectively recruited patients prior to receiving a new diagnosis of cancer and included spouses or partners. OBJECTIVE The aim of the Couples Cope Study is to understand the impact of undergoing a diagnostic biopsy and receiving a new cancer diagnosis on quality of life (QoL) in both patients and their spouses or partners, as well as on the quality of their relationship. This protocol paper describes the study design and assesses the feasibility of recruitment and retention. METHODS Study staff reviewed the schedules of collaborating physicians using specific encounter codes to identify patients scheduled for breast or prostate biopsies. Potential participants were prescreened via the electronic health record and sent a recruitment letter at least 2 to 3 weeks prior to their biopsy procedure. Patients subsequently underwent a phone screening to determine eligibility. Patients who enrolled provided study staff with contact information for their spouses or partners. All consent forms were completed online. Surveys were completed online prior to receiving the biopsy results (baseline), and at 1, 3, 6, and 9 months after the biopsy. Study staff engaged in ongoing, personalized contact with participants and sent assessment completion reminders via phone and email. RESULTS A total of 2294 patients undergoing a breast or prostate biopsy were identified and 69% (n=1582) were eligible for phone screening following electronic health record prescreening. Of the 431 patients who underwent phone screening, 75% (n=321) were eligible to participate. Of the eligible patients, 72% (n=231) enrolled and 82% (n=190) of enrolled patients had an accompanying partner or spouse who also enrolled. A total of 77% (34/44) of patients who received a cancer diagnosis and 72% (26/36) of their spouses or partners were retained through 9 months, while 80% (53/66) of patients who received a benign diagnosis and 68% (42/62) of their partners were retained. CONCLUSIONS Prospective recruitment of patients undergoing diagnostic biopsy and their partners is feasible and requires both strategic collaboration with providers and concerted prescreening and recruitment efforts by study staff. Importantly, this study was able to conduct all study activities online without disrupting clinical workflow and without requiring patients and their spouses or partners to come into the laboratory. Consideration should be given to the ratio of biopsies to cancer diagnoses, which can vary significantly by cancer type. Prospective studies are needed and can inform our ability to provide effective support earlier to couples facing a possible cancer diagnosis. Future studies should examine other tumor types that have received less attention in QoL studies, include behavioral and neurobiological assessments beyond self-report measures, and follow couples beyond 9 months in order to examine long-term effects on QoL. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/52361

Background: A high rate of COVID-19 vaccination is critical to reduce morbidity and mortality related to infection and to control the COVID-19 pandemic. Understanding the factors that influence vaccine confidence can inform policies and programs aimed at vaccine promotion. We examined the impact of health literacy on COVID-19 vaccine confidence among a diverse sample of adults living in two major metropolitan areas. Methods: Questionnaire data from adults participating in an observational study conducted in Boston and Chicago from September 2018 through March 2021 were examined using path analyses to determine whether health literacy mediates the relationship between demographic variables and vaccine confidence, as measured by an adapted Vaccine Confidence Index (aVCI). Results: Participants (N = 273) were on average 49 years old, 63 % female, 4 % non-Hispanic Asian, 25 % Hispanic, 30 % non-Hispanic white, and 40 % non-Hispanic Black. Using non-Hispanic white and other race as the reference category, Black race and Hispanic ethnicity were associated with lower aVCI (-0.76, 95 % CI -1.00 to -0.50; -0.52, 95 % CI -0.80 to -0.27, total effects from a model excluding other covariates). Lower education was also associated with lower aVCI (using college or more as the reference, -0.73 for 12th grade or less, 95 % CI -0.93 to -0.47; -0.73 for some college/associate's/technical degree, 95 % CI -1.05 to -0.39). Health literacy partially mediated these effects for Black and Hispanic participants and those with lower education (indirect effects -0.19 and -0.19 for Black race and Hispanic ethnicity; 0.27 for 12th grade or less; -0.15 for some college/associate's/technical degree). Conclusions: Lower levels of education, Black race, and Hispanic ethnicity were associated with lower scores on health literacy, which in turn were associated with lower vaccine confidence. Our findings suggest that efforts to improve health literacy may improve vaccine confidence, which in turn may improve vaccination rates and vaccine equity. Clinical trials number: NCT03584490.

Background: Women with metastatic breast cancer face unique challenges as they cope with life-limiting prognoses and arduous treatments. However, the vast majority of research has focused on optimizing quality of life in women with early-stage, non-metastatic breast cancer and little is known about supportive care needs among women living with metastatic cancer. As part of a larger project that sought to inform the development of a psychosocial intervention, the aim of this study was to characterize supportive care needs among women with metastatic breast cancer and elucidate challenges unique to living with a life-limiting prognosis. Methods: Four, two-hour focus groups with 22 women were audio-recorded, transcribed verbatim, and analyzed in Dedoose using a general inductive approach to code categories and extract themes. Results: A total of 16 codes emerged from 201 participant comments regarding supportive care needs. Codes were collapsed into four supportive care need domains: 1. psychosocial, 2. physical and functional, 3. health system and information, and 4. sexuality and fertility needs. The most prevalent needs were breast cancer-related symptom burden (17.4%), lack of social support (14.9%), uncertainty (10.0%), stress management (9.0%), patient-centered care (7.5%), and sexual functioning (7.5%). More than half of needs (56.2%) were in the psychosocial domain and more than two-thirds of needs (76.8%) were in the psychosocial and physical and functional domains. Supportive care needs unique to living with metastatic breast cancer included the cumulative effects of continuously undergoing cancer treatment on symptom burden, worry from scan-to-scan regarding response to cancer treatments, diagnosis-related stigma and social isolation, end-of-life concerns, and misconceptions regarding metastatic breast cancer. Conclusions: Findings suggest that women with metastatic breast cancer have unique supportive care needs compared to women with early-stage breast cancer that are specific to living with a life-limiting prognosis and are not typically captured in existing self-report measures of supportive care needs. Results also highlight the importance of addressing psychosocial concerns and breast cancer-related symptoms. Women with metastatic breast cancer may benefit from early access to evidence-based interventions and resources that specifically address their supportive care needs and optimize quality of life and wellbeing.

Importance: Pervasive gender disparities exist in medicine regarding promotion, achievement of academic rank, and appointment to leadership positions. Fertility and childbearing concerns may contribute to these disparities. Objective: To assess fertility knowledge and concerns and evaluate barriers to family building and impact on academic attrition reported by female physicians. Design, setting, and participants: This qualitative study used mixed methods; first, structured 1:1 interviews exploring fertility knowledge and family-building concerns were conducted among 16 female physicians between November 2019 and May 2020. Transcripts were coded in Dedoose and used to develop a survey instrument with subsequent pilot testing conducted among 24 female physicians between April 2020 and September 2020. Data analysis was performed from January 2021 to March 2021. Main outcomes and measures: Fertility knowledge, perceptions of peer and institutional support surrounding childbearing, factors contributing to delayed childbearing, and impact of family planning on career decisions. Results: Among 16 women who completed qualitative interviews, 4 (25%) were Asian, 1 (6%) was Black, 1 (6%) was multiracial, and 10 (63%) were White; mean (SD) age was 34.9 (4.0) years. Evaluation of fertility knowledge revealed 3 notable themes: (1) inadequate formal fertility education, (2) informal learning through infertility experiences of patients, peers, or personal struggles, and (3) desire to improve medical education through early introduction and transparent discussions about infertility. Exploration of childbearing concerns similarly revealed several salient themes: (1) high incidence of delayed childbearing, (2) perceived lack of peer and administrative support, and (3) impact of family building on career trajectory. These themes were borne out in pilot testing of the survey instrument: of 24 female physicians (7 Asian women [27%], 1 Black woman [4%], 1 Hispanic or Latinx woman [4%], 1 multiracial woman [4%], 15 White women [58%]; mean [SD] age, 36.1 [6.7] years), 17 (71%) had delayed childbearing and 16 (67%) had altered their career for family-building reasons. Conclusions and relevance: Qualitative interviews identified fertility and family building concerns among female physicians and were used to develop a tailored survey for women in medicine. These findings suggest that female physicians may delay childbearing and make substantial accommodations in their careers to support family building. A large-scale national survey is needed to better characterize the unique fertility, childbearing, and parenting needs of women in academic medicine to better understand how these concerns may contribute to academic attrition.

Women living with metastatic (stage IV) breast cancer face unique challenges, including arduous treatments, side effects, chronic symptom burden, and emotional distress. Nevertheless, most research has paradoxically focused on optimizing quality of life in women with early-stage, non-metastatic breast cancer. Acceptance and Commitment Therapy (ACT) is an evidence-based, third-wave cognitive behavioral therapy that focuses on creating ‘a life worth living’ by promoting meaning and purpose and optimizing quality of life. ACT may be particularly well-suited for women with metastatic breast cancer as it addresses salient existential concerns, while allowing for the co-occurrence of feelings of grief and loss that are normal and expected when facing a life-limiting prognosis. This manuscript describes the rationale and study design of a pilot randomized controlled trial to develop and assess the feasibility and acceptability of a tailored ACT intervention for women living with metastatic breast cancer. Participants (N = 30) will be randomized 1:1 to either ACT, cognitive behavioral stress management (CBSM), or a usual care control. Both ACT and CBSM are 8-week, group-based interventions that will be delivered online. Primary outcomes are rates of acceptance, retention, and satisfaction. Preliminary effects on variables of interest, including meaning and purpose, psychological flexibility, and several domains of quality of life, will also be examined. Findings will inform the conduct of a full-scale randomized controlled trial of our tailored ACT intervention in women living with metastatic breast cancer.