Health System Perspective on Cost for Delivering a Decision Aid for Prostate Cancer Using Time-driven Activity-based Costing.

BACKGROUND: Previsit decision aids (DAs) have promising outcomes in improving decisional quality, however, the cost to deploy a DA is not well defined, presenting a possible barrier to health system adoption. OBJECTIVES: We aimed to define the cost from a health system perspective of delivery of a DA. RESEARCH DESIGN: Observational cohort. PATIENTS AND METHODS: We interviewed or observed relevant personnel at 3 institutions with implemented DA distribution programs targeting men with prostate cancer. We then created process maps for DA delivery based on interview data. Cost determination was performed utilizing time-driven activity-based costing. Clinic visit length was measured on a subset of patients. Decisional quality measures were collected after the clinic visit. RESULTS: Total process time (minutes) for DA delivery was 10.14 (UCLA), 68 (Olive View-UCLA), and 25 (Vanderbilt). Total average costs (USD) per patient were $38.32 (UCLA), $59.96 (Olive View-UCLA), and $42.38 (Vanderbilt), respectively. Labor costs were the largest contributors to the cost of DA delivery. Variance analyses confirmed the cost efficiency of electronic health record (EHR) integration. We noted a shortening of clinic visit length when the DA was used, with high levels of decision quality. CONCLUSIONS: Time-driven activity-based costing is an effective approach to determining true inclusive costs of service delivery while also elucidating opportunities for cost containment. The absolute cost of delivering a DA to men with prostate cancer in various settings is much lower than the system costs of the treatments they consider. EHR integration streamlines DA delivery efficiency and results in substantial cost savings.

Atlas of the receptive anal sex experience among people with prostates.

BACKGROUND: Receptive anal intercourse (RAI) is commonly practiced among individuals of all sexual orientations. However, negative stigmatization by society and health care professionals leads to the underreporting or this practice. AIM: We sought to assess and describe the subjective role of the prostate as a pleasure center in participants with diverse RAI experiences. The secondary aim was to describe nonprostatic areas within the anorectal region that produce erotic sensation and/or pain. METHODS: The exploratory sequential multimethod study design included focus groups and semistructured interviews with 30 individuals with prostates who had engaged in RAI. We used graphic elicitation of natal male anatomy to enhance visualization and assess participant perspectives. OUTCOMES: The main outcome of interest was the identification of anatomic locations of erogenous sensation and pain during RAI. RESULTS: Among the participants (median age 38, range 24-77 years), most participants (90%) identified as cisgender male. Three major themes emerged within the motivations for RAI, including (1) deriving intrinsic pleasure, (2) providing both pleasure for a partner and a way to improve intimacy/connection, and (3) an inability to be the insertive partner due to physical or mental challenges. The data suggest that the anorectal region produces a variety of erogenous sensations which participants find pleasurable. Overall, 2 major areas of erogenous sensation occur along the anterior rectal wall and within the anus. Within the context of RAI, 2 distinct categories of pain emerged, including pain with insertion and pain at other times. CLINICAL IMPLICATIONS: Understanding where erogenous sensation originates for each individual may predict sexual functioning after various surgical interventions. Timing and location of pain may aid in further characterizing anodyspareunia. STRENGTHS AND LIMITATIONS: Our study utilized a sequential design (from focus groups to interviews) with diverse RAI experiences, especially regarding age, geographic location, and prostate pathology. We included individuals of diverse gender identities, but too few to evaluate these groups independently from cisgender men. CONCLUSION: People with prostates experience pleasure in multiple areas during RAI. Contrary to some lay literature, the prostate region is not the subjective pleasure center for all individuals. Timing and location of pain during RAI may inform areas for intervention. Providing a language for pleasure and pain during RAI may improve communication between not only sexual partners but also clinicians and patients.

Relationship between pelvic sensations and lifetime exposure to receptive anal intercourse among people with prostates.

BACKGROUND: Despite the negative stigma on receptive anal intercourse (RAI), this behavior has a positive influence on individuals' sexual and relationship health. No large studies have previously looked at specific sensations experienced during RAI and how these sensations may change with experience. AIM: In this study we aimed to quantify commonly reported pelvic sensations during RAI and determine whether their presentation changes with increasing experience of RAI. METHODS: An internet survey was conducted on sensations felt during RAI among people with prostates from July 2022-January 2023. The survey content was developed based on a mixed-methods qualitative study and inquired about demographic and sexual histories as well as sensations (pleasure, pain, urinary, and bowel) experienced during RAI. We used descriptive statistics to describe demographic and sexual histories. All data were stratified by lifetime exposure to RAI. OUTCOMES: The primary outcomes assessed included the quantification of both the primary sensations experienced during RAI and the associated bother. RESULTS: In total, 975 participants completed the survey. The median age was 32 (range 18-78) years. The average age of first participation in RAI was 21 ± 6.6 years. Most respondents were having sex at least once a week (65%). Nine percent of respondents reported fewer than 10 experiences with RAI, 26% reported 11-50 RAI experiences, 32% reported 51-200 experiences, 16% reported 201-500 experiences, and 18% reported >500 experiences. As the number of experiences with RAI increased (from <10 to >500 exposures), the reported frequency of pleasurable sensation increased from 41% to 92% (P < .0001), whereas severe insertional pain and symptoms of bowel urgency decreased from 39% to 13% and from 21% to 6%, respectively (P < .0001). Urinary urgency sensation did not differ by lifetime RAI experience. CLINICAL IMPLICATIONS: Lifetime RAI exposure can be readily assessed and correlates not only with pelvic sensation but also many other aspects of sexual health. These results imply that the etiology of dissatisfaction with pleasure or anodyspareunia during RAI may differ by lifetime RAI exposure. STRENGTHS AND LIMITATIONS: This is the first study to our knowledge to assess pelvic sensations experienced during RAI among a large sample of individuals. This is a cross-sectional study, and we cannot conclude how pelvic sensations change over time among individuals. Internet-based participants may not be representative of clinical populations. CONCLUSION: Lifetime exposure to RAI is positively associated with pleasure and is negatively associated with pain and bowel urgency. Pelvic sensations experienced during RAI appear to be dependent on lifetime RAI exposure history regardless of age.

Implementing evidence-based psychological treatments for cancer patients.

OBJECTIVE: New regulations and guidelines require implementation of screening and evidence based psychological treatment (EBT) for cancer patients, but little research exists to assist psychosocial care providers with implementation. This study aimed to develop a conceptual framework for community providers to consider as they embark on implementation of EBTs. METHODS: Full-time psychosocial care providers received dissemination training in delivery of a cancer-specific EBT and then received implementation support. Qualitative data were collected in two phases. In Phase I, after training, trainees (N = 52) participated in six monthly group conference calls with six to eight trainees and EBT trainers. Qualitative data from the calls were analyzed using a grounded theory paradigm. In Phase II, the resultant framework was piloted with additional trainees (N = 73) during EBT training to prompt early planning for implementation at their home institutions. RESULTS: In Phase I, themes of 'person' (i.e. attitudes, vocalizations, and behaviors of others) and 'environment' factors (i.e. material, monetary, and time resources of organizations) affecting implementation emerged. It appeared that both factors influenced how easily barriers could be addressed, although positive person factors also appeared to positively influence environment factors. In Phase II, trainees found the framework acceptable and considered it when generating solutions for implementation challenges. CONCLUSIONS: The framework suggests tailoring implementation efforts to consider person and environment factors. As person support is developed, resource limitations of the environment may be more easily addressed.

Outcomes of shipped live donor kidney transplants compared with traditional living donor kidney transplants.

The disparity between kidney transplant candidates and donors necessitates innovations to increase organ availability. Transporting kidneys allows for living donors and recipients to undergo surgery with a familiar transplant team, city, friends, and family. The effect of shipping kidneys and prolonged cold ischemia time (CIT) with living donor transplantation outcomes is not clearly known. This retrospective matched (age, gender, race, and year of procedure) cohort study compared allograft outcomes for shipped live donor kidney transplants and nonshipped living donor kidney transplants. Fifty-seven shipped live donor kidneys were transplanted from 31 institutions in 26 cities. The mean shipping distance was 1634 miles (range 123-2811) with mean CIT of 12.1 ± 2.8 h. The incidence of delayed graft function in the shipped cohort was 1.8% (1/57) compared to 0% (0/57) in the nonshipped cohort. The 1-year allograft survival was 98% in both cohorts. There were no significant differences between the mean serum creatinine values or the rates of serum creatinine decline in the immediate postoperative period even after adjusted for gender and differences in recipient and donor BMI. Despite prolonged CITs, outcomes for shipped live donor kidney transplants were similar when compared to matched nonshipped living donor kidney transplants.

Purposeful normalization when caring for husbands recovering from prostate cancer.

Despite a growing awareness that prostate cancer is a "couple's disease," the coping strategies, subjective distress, and emotional needs of partners are not adequately addressed. To better understand wives' experiences and processes they enact, we recruited 28 low-income Latinas caring for husbands recovering from prostatectomies to participate in interviews at three time points. Their narratives destabilize a common focus on physical side effects and an implicit bias toward men's reactions. We critically examine an overarching process of normalization, with underlying themes working both toward and against normality. We identified dissonance between detailed accounts of major lifestyle changes and professed normalization. We detail the women's purposeful methods to counteract negative impacts on their lives while seeking support externally. A better understanding of women's strategies and coping is critical to design interventions and education to both capitalize on partners' role in recovery while also addressing hidden causes of increased subjective distress.

Priorities for efficacy trials of gender-affirming hormone therapy with estrogen: collaborative design and results of a community survey.

PURPOSE: Treatment guidelines for gender-affirming hormone therapy with estrogen (GAHT-E) recommend specific dosing regimens based on limited data. Well-controlled efficacy trials are essential to tailoring treatment to patient goals as the guidelines recommend. The goal of this study was to take a foundational step toward designing community-centered effectiveness trials for gender-diverse individuals seeking GAHT-E. METHODS: Our team developed a cross-sectional survey based on broad clinical experience and consultation with our community advisory board. The survey included 60 items covering demographics, transition history, goals and priorities for treatment, indicators of treatment success, sexual function goals, and future research priorities. The survey was distributed during the summer of 2021, primarily through social networks designed for gender-expansive individuals seeking treatment with estrogen. RESULTS: A total of 1270 individuals completed the survey. Overall treatment goals most frequently rated "extremely important" or "very important" were the following: (1) improved satisfaction with life (81%), (2) appearing more feminine (80%), (3) appearing less masculine (77%), (4) improved mental health (76%), and (5) being seen as your true gender by others (75%). The three body characteristics most frequently rated "highest priority" or "high priority" among changes were the following: (1) facial hair (85%), (2) breast shape or size (84%), and (3) body shape (80%). The highest-rated research priority was comparing feminization with different routes of estrogen administration. CONCLUSION: The goals and experiences of individuals seeking GAHT-E are diverse. Future clinical trials of GAHT-E should be grounded in the needs and priorities of community stakeholders.

Needs of transgender children and adolescents presenting to an urban gender health program.

BACKGROUND: Youth who identify as transgender and gender diverse (TGD) are increasingly presenting to pediatric providers. Gender-affirming surgery is often delayed until after a patient reaches the age of majority; however, patients may desire surgery at a younger age. OBJECTIVE: We explore the specific clinical needs of this vulnerable population, including surgical requests. STUDY DESIGN: We present a cross-sectional study of patient intake interviews at time of presentation to our gender health program from 2017 to 2020. We summarize patient demographics, medical histories, and gender-affirming care needs by gender identity and age of presentation. RESULTS: Of 92 patients analyzed, those included were 19 trans girls, 55 trans boys, and 18 non-binary individuals. The median age of our sample was 15 (range 5-17). The median age (IQR) while first questioning gender was 10 (7-12). Sexual orientation was variable with 28 (43%) not sure/unknown. The majority of patients present for primary care services (grade schoolers 75%, early teens 78%, and late teens 77%, p = 0.97) and hormone management (grade schoolers 42%, early teens 62%, and late teens 77%, p = 0.06). Late teens were more likely to present for surgical services (49%) compared to grade schoolers (25%) and early teens (11%), p = 0.001. Prior psychiatric diagnoses were common in all age groups. Trans girls were interested in a variety of affirming procedures whereas trans boys and non-binary individuals primarily sought chest surgery (see summary figure). CONCLUSION: Pediatric gender affirming care needs are varied and multidisciplinary within our center. By age 16, about half of TGD individuals are seeking surgical services. On average, there was a 4-5 year delay from age at first questioning one's gender and presenting to our gender health program. Primary care physicians in particular may prepare to serve this complex population by familiarizing themselves with treatment needs, including developing a network of competent surgical referrals.

The Impact of Pleasure and Pain on Frequent Substance Use During Receptive Anal Intercourse.

Sexualized drug use (SDU) describes use of any psychoactive substance before or during planned sexual activity to facilitate, intensify, or prolong intercourse. The impact of pain, pleasure, and other mediators on SDU is not well characterized. This study aimed to distinguish the motivations behind different classes and frequencies of substance use during receptive anal intercourse (RAI). Data were from an internet-based survey conducted between July 2022-January 2023. We measured the frequency of SDU for five substances: poppers, alcohol, marijuana, methamphetamine, and nicotine. Satisfaction with pleasurable sensations during RAI and any type of pain bother during RAI were assessed on a 5-point scale. Multivariable logistic regression was performed for 1,119 respondents. Our results showed a strong association between bothersome pain during RAI and frequent alcohol (aOR 2.1), marijuana (aOR 2.4), nicotine (aOR 3.1), and meth (aOR 5.9) use. None of the five substance classes studied was correlated with dissatisfaction with pleasure during RAI. Frequent popper use was associated with increasing lifetime RAI experience and number of sexual partners. The mechanism behind SDU during RAI is substance-specific and multifactorial. Bothersome pain during RAI is highly associated with frequent SDU. Inquiring about pain during RAI may offer avenues for intervention.

Comprehension, utility, and preferences of prostate cancer survivors for visual timelines of patient-reported outcomes co-designed for limited graph literacy: meters and emojis over comics.

OBJECTIVE: Visual timelines of patient-reported outcomes (PRO) can help prostate cancer survivors manage longitudinal data, compare with population averages, and consider future trajectories. PRO visualizations are most effective when designed with deliberate consideration of users. Yet, graph literacy is often overlooked as a design constraint, particularly when users with limited graph literacy are not engaged in their development. We conducted user testing to assess comprehension, utility, and preference of longitudinal PRO visualizations designed for prostate cancer survivors with limited literacy. MATERIALS AND METHODS: Building upon our prior work co-designing longitudinal PRO visualizations with survivors, we engaged 18 prostate cancer survivors in a user study to assess 4 prototypes: Meter, Words, Comic, and Emoji. During remote sessions, we collected data on prototype comprehension (gist and verbatim), utility, and preference. RESULTS: Participants were aged 61-77 (M = 69), of whom half were African American. The majority of participants had less than a college degree (95%), had inadequate health literacy (78%), and low graph literacy (89%). Among the 4 prototypes, Meter had the best gist comprehension and was preferred. Emoji was also preferred, had the highest verbatim comprehension, and highest rated utility, including helpfulness, confidence, and satisfaction. Meter and Words both rated mid-range for utility, and Words scored lower than Emoji and Meter for comprehension. Comic had the poorest comprehension, lowest utility, and was least preferred. DISCUSSION: Findings identify design considerations for PRO visualizations, contributing to the knowledge base for visualization best practices. We describe our process to meaningfully engage patients from diverse and hard-to-reach groups for remote user testing, an important endeavor for health equity in biomedical informatics. CONCLUSION: Graph literacy is an important design consideration for PRO visualizations. Biomedical informatics researchers should be intentional in understanding user needs by involving diverse and representative individuals during development.