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Patient-provider communication is a critical component of healthcare and is associated with treatment quality and outcomes for women with breast cancer. This qualitative study examines similarities and differences in patient perspectives of communication needs between Black and White breast cancer survivors. We conducted four focus groups (N=28) involving women with early-stage breast cancer on adjuvant endocrine therapy (AET), stratified by race and length of time on AET (< 6 months and >6 months). Each group was moderated by a race-concordant moderator and analyzed by emergent themes. Participants expressed common patient-provider communication needs, namely increased sensitivity from oncologists during the initial cancer diagnosis, personalized information to facilitate treatment decisions, emotional support during the transition from active treatment to maintenance, and rapid provider responses to mobile app-based queries. Communication differences by race also emerged. Black women were less likely than White women to describe having their informational needs met. White women praised longstanding relationships with providers, while Black women shared personal stories of disempowered interactions and noted the importance of patient advocates. White women more often reported privacy concerns about technology use. Unlike White women, Black women reported willingness to discuss sensitive topics, both online and offline, but believed those discussions made their providers feel uncomfortable. Early-stage breast cancer patients on AET, regardless of race, have similar needs for patient-centered communication with their oncologists. However, Black women were more likely to report experiencing poorer communication with providers than White women, which may be improved by technology and advocates.

Background Long-term use of adjuvant endocrine therapy (AET) among women with early-stage, hormone receptor-positive breast cancer significantly reduces the risk of hospitalizations, cancer recurrence, and mortality. AET is associated with adverse symptoms that often result in poor adherence. A web-enabled app offers a novel way to communicate and manage symptoms for women on AET. In a region with significant racial disparities in breast cancer outcomes, our study tests the impact of a web-enabled app that collects and transmits patient-reported symptoms to healthcare teams to facilitate timely and responsive symptom management on medication adherence. Methods In this randomized controlled trial, we randomize 300 patients initiating AET to one of three arms: 1) an “App” group (n = 100) that receives weekly reminders to use the THRIVE study app; 2) an “App+Feedback” group (n = 100) that receives weekly reminders and tailored feedback based on their use of the app; or 3) a “Usual Care” group (n = 100) that receives usual care only. Participants are stratified by race: 50% White and 50% Black. The duration of the intervention is six months following enrollment, and outcomes are assessed at 12-months. The primary outcome is adherence, which is captured using an electronic monitoring pillbox. Secondary outcomes include symptom burden, quality of life, self-efficacy for managing symptoms, and healthcare costs. We also evaluate the impact of the intervention on racial disparities in adherence. Data are derived from three sources: electronic health record data to capture treatment changes, healthcare utilization, and health outcomes; self-report survey data related to adherence, symptom burden, and quality of life; and an electronic medication monitoring device that captures adherence. Discussion A successful web-enabled intervention could be disseminated across systems, conditions, and populations. By evaluating the impact of this intervention on a comprehensive set of measures, including AET adherence, patient outcomes, and costs, our study will provide valuable and actionable results for providers, policy makers, and insurers who strive to achieve the “Triple Aim” – reduce costs while improving health outcomes and the patient care experience. Trial registration NCT03592771. Prospectively registered on July 19, 2018.

Background: Women with hormone receptor-positive, early-stage breast cancer who adhere to adjuvant endocrine therapy (AET) reduce the risk of cancer recurrence and mortality. AET, however, is associated with adverse symptoms that often result in poor adherence. We applied participatory action research (PAR) principles to conduct focus groups and interviews to refine and enhance a web-enabled app intervention that facilitates patient-provider communication about AET-related symptoms and other barriers to adherence. Methods: We conducted four focus groups with women with early-stage breast cancer on AET (N=28), stratified by race (Black and White) and length of time on AET (6 months), to determine preferences and refine the app-based intervention. A fifth mixed-race focus group was convened (N=6) to refine THRIVE app content using high-fidelity mock-ups and to develop new, tailored feedback messages. We also conducted interviews with oncology nurses (N=5) who participated in the THRIVE randomized controlled trial. Results: Participants reported preferences for weekly reminder messages to use the THRIVE app, a free-text option to write in AET-related symptoms, and app aesthetics. Other requested app features included: a body map for identifying pain, sleep and dental problems on the symptom list, a dashboard, tailored feedback messages, and information about social support resources. Participants also developed new intervention messages, decided which messages to keep, and edited language for appropriateness and sensitivity. They also discussed the type of electronic pill monitor and incentive plan to be used in the intervention. Nurses reported THRIVE alerts integrated seamlessly into their clinical workflow and increased patient-provider communication, facilitating quicker response to patients’ reported symptoms. Nurses reported no negative feedback or usability concerns with the app. Conclusions: THRIVE app content reflects researchers’ partnership with a racially diverse sample of breast cancer survivors and healthcare providers and adherence to participatory design by incorporating patient-requested app features, app aesthetics, and message content. The app has the potential to improve AET adherence and quality of life among breast cancer survivors and reduce disparities in mortality rates for Black women by facilitating communication with healthcare providers.

Objective Nocturnal enuresis is more prevalent in youth with sickle cell disease (SCD) compared to the general population. The purpose of this study is to estimate prevalence of nocturnal enuresis using diagnostic criteria and identify associated sociodemographic, medical, and health-related quality of life (HRQOL) factors. Methods Youth with SCD (N = 248; ages 6.00–17.99 years) and their caregivers completed semi-structured interviews and questionnaires. HRQOL was measured using the Pediatric Quality of Life (PedsQL) Inventory. Medical information was abstracted from medical record. We generated multivariable logistic regression models to examine associations between factors and current nocturnal enuresis and nocturnal enuresis occurring any time in the past (lifetime). Results Among participants (mean age, 11.3 ± 3.6 years; 50.8% male), 21.4% reported current nocturnal enuresis and 46% reported lifetime nocturnal enuresis. Male sex [odds ratio (OR), 2.57; p = .001], difficulty arousing from sleep (OR, 3.57; p Conclusions Nocturnal enuresis is prevalent in youth with SCD and is associated with HRQOL, diminished sleep, greater fatigue, and disease severity markers. Routine assessment of sleep behaviors and fatigue are necessary when treating patients with SCD to understand the impact of nocturnal enuresis on HRQOL.

Background: Women diagnosed with breast cancer transitioning from the active phase of treatment to the adjuvant phase of treatment experience fewer opportunities to receive support from their oncology team. During this period of time, the frequently unfulfilled social support needs reported by many oncology patients may be exacerbated for these women. Having social support is a critical component of cancer care and is associated with positive patient outcomes, including medication adherence and survival. Our study uses qualitative methods to evaluate the social support needs of a diverse group of women in the adjuvant phase of treatment and investigate any potential impact on cancer disparities. Method: Four 90-minute focus groups (N= 28) were conducted among women with breast cancer treatment who were prescribed tamoxifen or aromatase inhibitors, and then stratified by race (Black and White) and length of adjuvant treatment (i.e., < 6 month or > 6 month). These focus groups were held at a regional cancer center in the Mid-Southern US, a region with high Black-White breast cancer outcome disparities. The data were examined in accordance with conventions of thematic analysis to assess many topics related to the breast cancer experience including social support needs. Results: Both Black and White participants expressed a preference for having frequent and consistent access to providers to minimize feelings of isolation and meet new and persisting emotional and informational social support needs. Specifically, a participant highlighted how critical it was that she was “able to call my primary care provider” and spend “quite some time” so that she could get questions answered and ease her fears. The support from friends and family was also highlighted by the women. In addition, several women from each focus group expressed the importance of having loved ones present during important medical visits. For example, some participants mentioned patients needing “family or anybody around to discuss the findings” or having “someone to hug.” Most notably, participants sought and provided social support to each other in the focus group itself, exhibiting a phenomenon referred to as “experiential social support.” This was best exemplified by several recommendations in each focus group to “form support groups” and “meet once a month” as an outlet to discuss experiences and reciprocally provide support. Conclusions: Irrespective of race, women in the adjuvant phase of treatment reported needing more resources to meet their social support needs during this period of increased stress and less provider contact. The women found experiential support to be a vital component in meeting social support needs. Providers should consider implementing standardized methods to address the unmet social support needs of patients. For example, providers could assess for deficits in social support on a continuous basis (e.g., screening questions) and offer resources such as support groups and assigned patient advocates to fill gaps. Citation Format: Andrew J. Paladino, Janeane Anderson, Rebecca Krukowski, Lee Schwartzberg, J. Carolyn Graff, Tameka N. Jones, Gregory A. Vidal, Mehmet Kocack, Ilana Graetz. A qualitative exploration of social support needs of diverse patients with breast cancer in the adjuvant phase of treatment [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr A073.

Objective Nearly 1 in 5 patients hospitalized for ovarian cancer surgery are readmitted for complications that may have been prevented with monitoring. We conducted a randomized controlled feasibility trial to evaluate a postoperative web-based app intervention to provide real-time symptom monitoring among patients diagnosed or with suspected gynecological cancer who had open bilateral salpingo-oophorectomy surgery. Methods Participants were randomized into two groups: (1) App + Reminder: had access to the app, and use was encouraged with daily and/or weekly reminders; (2) app: had access to the app but received no reminders. The app displayed discharge instructions and queried symptoms. Patients' self-reported health information was integrated into their electronic health records. Outcomes above a predetermined threshold triggered alerts that indicated a patient may need medical intervention. Participants completed a questionnaire at baseline and 30-day follow-up. They were also invited to provide qualitative, post-intervention feedback. Results We screened 35 patients, with high rates of recruitment (74%, N = 26) and completion (93%, N = 24). Participants in the App + Reminder group had more frequent app use relative to the app group (p = 0.05). Using differences-in-differences (DID) analysis for quality of life, the App + Reminder group had relative increase in the mental health score (DID = 7.51, p = 0.15) but decrease in the physical health score (DID = −7.49, p = 0.13). Participant feedback suggested the relative decrease in physical quality of life was attributable to the app activating patients' focus on physical symptoms, not the intervention. Conclusion The pilot established feasibility, acceptability, and some potential benefits of a new web-based app intervention for gynecological oncology postoperative care.

Background Adjuvant endocrine therapies (AETs) (e.g. tamoxifen and aromatase inhibitors (AIs) are almost always prescribed to early stage breast cancer (BrCa) patients as AETs have been shown to reduce risk of recurrence and mortality for women with hormone receptor-positive early stage breast cancer. Despite proven efficacy and patient education efforts, AET adherence is suboptimal. Most patients report symptom burden as the most common cause for non-adherence. We conducted focus groups among this patient population to aid in the refinement of a communication app for patients to report symptoms to their healthcare team and receive tailored feedback messages. The app aims to improve AET adherence, symptom management, and quality of life. Method Four focus groups (N=28), stratified by race (Black and White) and patient length of time on AET ( < 6 months AET use or > 6 months AET use), were conducted in Memphis, Tennessee. The focus groups were audiotaped, transcribed, and analyzed to identify key themes. Results Participants indicated they would be open to utilizing technology throughout their cancer treatment. The app was viewed as a conduit in the exchange of information between the patient and their healthcare team. Even patients who typically did not use or “like” technology thought the messages and symptom management information would be beneficial. Reporting symptoms through the app and then receiving a phone call from their healthcare team to respond to those symptoms was viewed as the most beneficial component to the patients. One participant stated how she could see the benefit of the symptom reporting feature when first initiating AET therapy: “There were times when I wanted to go tell my doctor, “STOP THIS MEDICINE RIGHT NOW, find me something else to do, find something else besides this because this stuff is not working for me.” In regards to the tailored feedback messaging through the app, participant stated, “I like the one that says, ‘Take meds regularly is an effective way to prevent cancer from coming back,’ because for me that is the only reason why I take it SOME days just to make sure that it doesn’t come back because I HATE the stuff.” Conclusions Early stage hormone receptor positive breast cancer patients may benefit from utilizing technology in the management of their care. The use of a communication app with tailored feedback messaging has the potential to increase medication adherence, improve symptom management and quality of life, improve the provider- patient relationship, and ultimately reduce mortality. As healthcare shifts toward focusing on patient-centered care and preparing patients to manage their care at home, apps like the one examined in the current study may play a vital role in helping these and other patient populations. Citation Format: Tameka N. Jones, Andrew J. Paladino, Gregory A. Vidal, Rebecca Krukowski, J. Carolyn Graff, Ryan Blue, Ilana Graetz, Lee Schwartzberg, Mehmet Kocak, Janeane Anderson. New school health care: Utilizing technology in the treatment and support of women with breast cancer in the ambulatory setting [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2019; 2019 Mar 29-Apr 3; Atlanta, GA. Philadelphia (PA): AACR; Cancer Res 2019;79(13 Suppl):Abstract nr 2428.