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Breast cancer risk reduction has been validated by large-scale clinical trials, but uptake remains low. A risk communication tool could provide personalized risk-reduction information for high-risk women. A low-literacy-friendly, visual, and personalized tool was designed as part of the Women Informed to Screen Depending On Measures of risk (WISDOM) study. The tool integrates genetic, polygenic, and lifestyle factors, and quantifies the risk-reduction from undertaking medication and lifestyle interventions. The development and design process utilized feedback from clinicians, decision-making scientists, software engineers, and patient advocates. We piloted the tool with 17 study participants, collecting quantitative and qualitative feedback. Overall, participants felt they better understood their personalized breast cancer risk, were motivated to reduce their risk, and considered lifestyle interventions. The tool will be used to evaluate whether risk-based screening leads to more informed decisions and higher uptake of risk-reduction interventions among those most likely to benefit.

Introduction:We examined the characteristics and financial outcomes of online crowdfunding campaigns for patients with major urological cancers in the U.S.Methods: This cross-sectional study analyzed publicly available data from GoFundMe, the largest online medical crowdfunding service, via automated web scraping. Online campaigns from 2010 to 2018 with the following primary cancer types were included: kidney, prostate, bladder and testicular. Financial outcomes were compared using Kruskal-Wallis and Wilcoxon rank-sum tests. Multivariable analyses were utilized to identify predictors of campaign financial outcomes.Results: Kidney cancers were the most frequent online campaign type (478), followed by prostate (379), bladder (202) and testicular (175) malignancies. Urological cancer campaign recipients frequently requested funding for medical expenses (71%) during active treatment (57%). After adjustment, testicular cancer and children's cancer campaigns generated more donations than other urological and adult cancer campaigns (p <0.05). Family and friend-authored campaigns generated more donations and average donation amounts than self-authored campaigns (p <0.05). Campaign narratives focused on disheartening circumstances received fewer donations than narratives focused on the recipient's high moral character or contributions to society (p <0.05), and unclear narratives received the smallest donation amounts (p <0.05).Conclusions: Urological cancer crowdfunding in the U.S. is primarily used to finance uncovered costs associated with medical care during active treatment. Crowdfunding financial outcomes are likely related to the campaign recipient's age, malignancy type, social network and primary appeal of the narrative. Urologists should be aware of trends in medical crowdfunding in order to better understand the financial burden this patient population faces.

Peyronie’s disease (PD) is a fibrotic disorder of the tunica albuginea that may result in penile deformity, pain, a palpable plaque, and erectile dysfunction. In order to understand the psycho-sexual impacts of PD on patients and their partners, we selected three online forums containing the largest number of threads on PD. Threads focusing on the psycho-sexual impacts posted from January 1, 2011 to January 1, 2021 were compiled, and thematic analysis was performed on Dedoose. There were 277 unique posters, including 225 patients and 52 partners. Eighty-four categories and five themes were developed including information and social support, physical symptoms, psycho-sexual symptoms, treatment and effect, and impacts on partners and relationship. Emotional distress including depressed mood (n = 75, 33.3%) and feelings of isolation (n = 41, 18.2%) was prevalent. Partners developed sexual dysfunction including sexual dissatisfaction (n = 11, 21.2%) and dyspareunia (n = 4, 7.7%). Relationships experienced disruption (n = 14, 5.1%) or termination (n = 10, 3.6%). Posters received psychological treatment including psychotherapy (n = 20, 8.9%) and antidepressants (n = 17, 7.6%). Of these, 12 reported improvement and 11 stated no improvement. On these forums, psychological burden affecting individuals with PD and their partners is reported. Few seek help from a psychologist or therapist, and psychological distress may persist even after successful PD treatment. Further research is needed to identify strategies for effective psychological management.

BACKGROUND Glioblastoma (GBM) patients fall within NCCN and ASCO guidelines for early palliative care (PC). However, data suggests they are less likely than systemic cancers to be referred to PC and often later in their illness. This results in potential missed opportunities, both for improving symptom control and earlier completion of important tasks, like advance care planning. Data on how to best incorporate comprehensive PC into routine neuro-oncology (NO) patient care is needed. METHODS We piloted a program embedding a PC physician into UCSF’s NO clinic one half-day per week. NO physicians were encouraged to refer GBM patients within 3 months of diagnosis and other patients with PC needs. PC visits were offered in-person, by telemedicine, or at home. PC physician and NO social worker made joint visits when possible; chaplaincy support was available by telemedicine. Data was collected using Palliative Care Quality Network (PCQN) database and patient satisfaction survey. RESULTS To date, 37 patients have been referred resulting in 103 visits (average 2.8 visits/person): 25% in-person; 68% telemedicine; 6% at home. PC physician and NO social worker met jointly with 46% visits. Median age was 58 years, 41% female, 81% non-Hispanic white, 84% GBM, median 9 months from diagnosis, and 73% receiving first line treatment. Interventions addressed across visits: 94% non-pain symptoms, 76% psychosocial needs; 71% pain; and 70% GOC. Results from satisfaction survey demonstrated 79% would recommend seeing PC embedded in NO to others and highest benefits were attention to practical considerations to staying healthy at home, discussing preferences for future medical care, and help with coping. CONCLUSIONS Embedding PC into NO clinics is a unique model for addressing symptoms and GOC early, is well received by patients and caregivers, and provides opportunities for collaboration and PC physicians to specialize in caring for needs of NO patients.