Experiences of patients and family members with follow-up care, information needs and provider support after identification of Lynch Syndrome.

BACKGROUND: Lynch Syndrome is among the most common hereditary cancer syndromes and requires ongoing cancer surveillance, repeated screenings and potential risk-reducing surgeries. Despite the importance of continued surveillance, there is limited understanding of patient experiences after initial testing and counseling, the barriers or facilitators they experience adhering to recommendations, and how they want to receive information over time. METHODS: A cross-sectional, observational study was conducted among 127 probands and family members who had received genetic testing for Lynch Syndrome. We conducted semi-structured interviews to determine proband and family member experiences after receiving genetic testing results including their surveillance and screening practices, information needs, and interactions with health care providers. Both closed-ended and open-ended data were collected and analyzed. RESULTS: Both probands (96.9%) and family members (76.8%) received recommendations for follow-up screening and all probands (100%) and most family members (98.2%) who tested positive had completed at least one screening. Facilitators to screening included receiving screening procedure reminders and the ease of making screening and surveillance appointments. Insurance coverage to pay for screenings was a frequent concern especially for those under 50 years of age. Participants commented that their primary care providers were often not knowledgeable about Lynch Syndrome and surveillance recommendations; this presented a hardship in navigating ongoing surveillance and updated information. Participants preferred information from a knowledgeable health care provider or a trusted internet source over social media or support groups. CONCLUSIONS: Probands and family members receiving genetic testing for Lynch Syndrome generally adhered to initial screening and surveillance recommendations. However, factors such as insurance coverage and difficulty finding a knowledgeable healthcare provider presented barriers to receiving recommended follow-up care. There is an opportunity to improve care through better transitions in care, procedures to keep primary care providers informed of surveillance guidelines, and practices so that patients receive reminders and facilitated appointment setting for ongoing screening and surveillance at the time they are due.

Uptake of genetic counseling and multi-gene panel testing among women in the Intermountain West with previous negative BRCA1 and BRCA2 results contacted for updated testing.

Women with a personal history of breast or ovarian cancer who previously had BRCA1/2 testing now have the opportunity for additional genetic risk information through multi-gene panel testing. However, little is known about women's receptivity to further contact and uptake of genetic counseling and updated genetic testing. Utilizing a clinic database to identify potential participants, we prospectively contacted women in the United States with a personal and/or family history of breast or ovarian cancer who had negative BRCA1/2 testing, which was performed primarily between 2011 and 2018. Eligible and interested participants were scheduled for a genetic counseling appointment to discuss updated genetic testing using a multi-gene panel. We attempted to contact 455 participants, screened 203 (45%), and 103 (23%) completed a pre-test genetic counseling visit to discuss updated testing. Of these, 88 participants had updated multi-gene panel testing. Participants had an average age of 59 years, and most (78%) had breast cancer with an average age of 45 at diagnosis. The majority (97%) of participants were white. Of participants who underwent panel testing, 13% (n = 11) had at least one pathogenic variant identified. Most participants (86%) had an out-of-pocket cost of $100 or less for their panel. There is a sizable population of women with a personal and/or family history of breast or ovarian cancer and negative BRCA1/2 test results who would qualify for updated multi-gene panel testing. In our study, 59% of those reached who were eligible completed a pre-test genetic counseling visit. Clinics could consider an outreach program to offer genetic counseling and updated genetic testing. Supports for this type of effort may include coordinators and genetic counseling assistants and an available database with patients' contact information and prior genetic test results. Updated testing allows women more information about their risk and may expand the value of genetic counseling.

Diverse caregivers' HPV vaccine-related awareness and knowledge.

Objectives: To assess factors associated with HPV vaccine-related awareness and knowledge among caregivers of adolescents from five ethnic community groups in Utah.Design: For this community-based participatory research study, we surveyed N = 228 caregivers of teens aged 11-17 years from African American, African refugee, American Indian/Alaskan Native, Hispanic/Latino, and Native Hawaiian/Pacific Islander community groups in Utah about their HPV vaccine awareness and knowledge.Results: Participants exhibited high awareness of cervical cancer (71.05%), moderate awareness of HPV (53.95%), and low awareness of the HPV vaccine (46.49%). HPV vaccine-related knowledge was mostly worse, with fewer than half the participants reporting knowing that HPV can cause cervical cancer (46.93%), that most people are infected with HPV at some point in their lives (28.95%), that HPV is asymptomatic in females (36.40%) and males (37.28%), that the HPV vaccine is recommended for adolescent females (41.67%) and males (36.40%), and that the HPV vaccine requires more than one dose (27.19%). HPV vaccine-related awareness and knowledge were significantly associated with race/ethnicity, educational attainment, income, occupation, birthplace, parents' birthplace, English usage, health insurance coverage, type of health insurance, and child having a primary care provider (all p < 0.05). HPV vaccine-related knowledge (p < 0.05) and awareness (p < 0.05) of caregivers were associated with a child in the household receiving the HPV vaccine.Conclusion: Our findings indicate a need to develop educational interventions in collaboration with diverse communities in Utah. We underscore the importance of promoting knowledge about the existence of the HPV vaccine, as well as deeper HPV vaccine-related issues (e.g. HPV risks, treatment, and recommendations).

A Multi-state Evaluation of Oral Health Students' Knowledge of Human Papillomavirus-Related Oropharyngeal Cancer and HPV Vaccination.

Human papillomavirus-related oropharyngeal cancers (HPV-OPCs) are on the rise, yet HPV knowledge among dental professionals remains low. The purpose of this multi-state study was to examine sociodemographic factors associated with final year dental hygiene (DH), third year dental (DS3), and fourth year dental (DS4) students' knowledge regarding HPV, HPV-OPC, and HPV vaccination. Twenty dental programs in the USA were approached in the implementation phase to complete an online, 153-item, self-administered questionnaire that was developed and tested in a previous study. Descriptive statistics and chi-square analyses were conducted in SAS version 9.4 to examine the relationship between sociodemographic variables with HPV, HPV-OPC, and HPV vaccination knowledge levels. This study included the participation of students from 15 dental programs (n = 380) with an overall response rate of 28%. Although the results cannot be generalized to the entire population of dental students in the USA, most students had inadequate overall HPV knowledge (65%), HPV-OPC knowledge (80%), and HPV vaccination knowledge (55%). While all student groups displayed adequate general HPV knowledge levels (≥ 70% correct responses), gender, racial, religious, age, and regional differences were observed. Future dental professionals need to have adequate levels of HPV knowledge to aid in reducing the HPV-OPC burden. This study identified sociodemographic factors related to lower knowledge of HPV, HPV-OPC, and HPV vaccination, and highlights groups of students with greater needs for HPV education. This study provides a foundation for future research and interventions to be developed. Dental institutions can use findings to strengthen curricula development.

Understanding Skin Screening Practices Among Children at Elevated Risk for Melanoma to Inform Interventions for Melanoma Prevention and Control.

Melanoma is the deadliest form of skin cancer. Screening can aid in early disease detection, when treatment is more effective. Although there are currently no consensus guidelines regarding skin screening for pediatric populations with elevated familial risk for melanoma, at-risk children with the help of their parents and healthcare providers may implement skin self-exams. Healthcare providers may also recommend screening practices for these children. The goal of the current study was to describe current screening behaviors and provider recommendation for screening among children of melanoma survivors. Parents of children with a family history of melanoma completed a questionnaire that included items on children's screening frequency, thoroughness, and who performed the screening. Seventy-four percent of parents reported that their children (mean age = 9.0 years, SD = 4.8) had engaged in parent-assisted skin self-exams (SSEs) in the past 6 months. Only 12% of parents reported that children received SSEs once per month (the recommended frequency for adult melanoma survivors). In open-ended responses, parents reported that healthcare providers had provided recommendations around how to conduct SSEs, but most parents did not report receiving information on recommended SSE frequency. Twenty-six percent of parents (n = 18) reported that children had received a skin exam by a healthcare provider in the past 6 months. The majority of children with a family history of melanoma are reportedly engaging in skin exams despite the lack of guidelines on screening in this population. Future melanoma preventive interventions should consider providing families guidance about implementing screening with their children.

Parent and child perspectives on perceived barriers to child sun protection and their association with sun protection strategies among children of melanoma survivors.

BACKGROUND/OBJECTIVES: Children with an elevated familial risk for melanoma inconsistently implement sun protection behaviors that could mitigate their melanoma risk. Little is known about perceived barriers to child sun protection among this at-risk group and their parents, and the extent to which perceived barriers are associated with child sun protection. The goal of this study was to examine, among children with a family history of melanoma, the frequency with which children and their parents reported barriers to child sun protection and the extent to which barriers were associated with reported use of sun protection among children. METHODS: Children with a family history of melanoma and their parents completed questionnaires assessing perceived barriers and reported child use of sun protection. RESULTS: Common barriers to child sun protection included being bothered by implementing the behavior or forgetting. A greater number of perceived barriers were associated with less frequent child use of sunscreen, long-sleeved shirts, long pants, and shade. CONCLUSIONS: Children at elevated risk for melanoma due to a family history of the disease and their parents perceive multiple barriers to sun protection that are associated with children's use of these melanoma preventive behaviors. Sun protection interventions for this at-risk population could provide families with specific strategies to address common barriers to implementing child sun protection.

An Electronic Medical Record Alert Intervention to Improve HPV Vaccination Among Eligible Male College Students at a University Student Health Center.

This pilot study aims to improve HPV vaccination for college aged males at a student health center. The first part of the study consisted of a focus group that assessed the barriers and facilitators of HPV vaccination among healthcare providers and clinic staff (N = 16). Providers reported missed opportunities for HPV vaccination. For the second part of the study, providers and staff reviewed medical records of patients ages 18-26 with student health insurance and with < 3 doses of the HPV vaccine at baseline (12/1/2014 to 7/31/2015) and follow-up (12/1/2015 to 7/31/2016). A computer-automated EMR alert was generated in the medical record of eligible male patients (N = 386). Z-scores were estimated for two-sample proportions to measure change in HPV vaccine rates at baseline and follow-up for males and females. HPV vaccine initiation rates increased among males (baseline: 5.2% follow-up: 25.1%, p < 0.001). This study shows that EMR alerts improved HPV vaccine initiation rates among insured college-aged males.

Barriers and Facilitators to Melanoma Prevention and Control Behaviors Among At-Risk Children.

Melanoma prevention is essential for children who are at elevated risk for the disease due to family history. However, children who carry a familial risk for the disease do not optimally adhere to recommended melanoma preventive behaviors. The current study sought to identify perceived barriers to and facilitators of children's engagement in melanoma preventive behaviors among children at elevated risk for melanoma due to family history of the disease (i.e., having a parent with a history of melanoma) from both parents' and childrens' perspectives. Qualitative methods were employed and consisted of separate focus group discussions with children (ages 8-17 years, n = 37) and their parents (n = 39). Focus group transcripts were coded using content analysis. Parents and children reported a number of barriers and facilitators, including on the individual (e.g., knowledge and awareness, preferences), social (e.g., peer influences, family modeling and communication), and contextual (e.g., healthcare provider communication) levels. The identified categories of barriers and facilitators both confirm and extend the literature documenting the reasons children who are at elevated risk for melanoma do not engage in melanoma prevention and control behaviors. Programs aiming to decrease melanoma risk among children of melanoma survivors could help families address their barriers to preventive behavior implementation and build on facilitators. Melanoma survivors and their children could benefit from support on their interactions with healthcare providers, schools, peers, and other caregivers about melanoma prevention.

Pilot Test of Survey to Assess Dental and Dental Hygiene Student Human Papillomavirus-Related Oropharyngeal Cancer Knowledge, Perceptions, and Clinical Practices.

This was the first study to develop and pilot test an assessment tool for the examination of human papillomavirus (HPV)-related oropharyngeal cancer (OPC) knowledge, perceptions, and clinical practices of oral health students. An interdisciplinary team developed the tool using surveys that examined this topic in other populations. The tool was then pilot tested at two different dental programs. Results from the pilot informed revisions to the final version of the tool. Of the 46 student participants, 18 were first-year dental hygiene and 28 were first-year dental students. The majority of participants were female (N = 29, 63%) and ages 18 to 29 years old (N = 41, 89%). Four scales used in the questionnaire were analyzed for reliability. Of these, the HPV and HPV-OPC knowledge and the HPV vaccination knowledge scales had Cronbach alphas of 0.71 and 0.79, respectively. Questions assessing HPV and the role of dental professionals had a correlation coefficient of 0.71. Questions assessing willingness to administer vaccines in the dental office had a correlation coefficient of 0.85. Assessing oral health students' HPV-OPC knowledge, perceptions, and clinical practices are important for future assessment of possible HPV-OPC cases. Dental professionals may be optimally positioned to provide HPV patient education. The tool developed and pilot tested in this study can help schools assess their students' knowledge and guide their dental curriculum to address deficiencies. Since this topic has not been effectively examined with dental health students, the results could help improve dental education and dental care.

Synchronous Ipsilateral High Submuscular Placement of Prosthetic Balloons and Reservoirs.

INTRODUCTION: Synchronous ipsilateral high submuscular placement of artificial urinary sphincter (AUS) pressure-regulating balloons (PRBs) and inflatable penile prosthesis (IPP) reservoirs in a single submuscular tunnel is a novel strategy that could be advantageous for patients who have had major pelvic surgery. AIM: To report our initial experience with synchronous ipsilateral vs bilateral placement of AUS PRBs and IPP reservoirs in men undergoing implant surgery. METHODS: We retrospectively reviewed all patients undergoing synchronous AUS and IPP placement from 2007 through 2015 by a single surgeon at our tertiary center. Patients were stratified according to ipsilateral vs bilateral placement of the AUS PRB and IPP reservoir. MAIN OUTCOME MEASURES: Reoperation rates because of infectious or erosive complications and mechanical failure were assessed. RESULTS: Of the 968 implant surgeries during the study period, 47 men had synchronous device placement, of whom 17 (36%) underwent ipsilateral placement of the PRB and reservoir. During a median follow-up of 19 months (range = 1-84 months), reoperations were necessary in 12 of 47 (26%) and were similar between groups (ipsilateral, 5 of 17, 29%; bilateral, 7 of 30, 23%; P = .73). Most reoperations were due to AUS-related complications (10 of 12, 83%) and nearly all patients with reoperation (10 of 12, 83%) had compromised urethras (ie, prior urethral surgery, radiation, or prior AUS implantation). The most common indication for reintervention was cuff erosion (4 of 47, 9%), with no difference between groups (ipsilateral, 3 of 17, 18%; bilateral, 1 of 30, 3%; P = .13). CONCLUSION: Synchronous ipsilateral high submuscular placement of urologic prosthetic balloons could safely facilitate prosthetic surgery in patients with a history of major pelvic and inguinal surgery.

Diverse Families' Experiences with HPV Vaccine Information Sources: A Community-Based Participatory Approach.

Current sources of publicly available human papillomavirus (HPV) information may not adequately meet the needs of diverse families. This study sought to describe associations between sociodemographic and acculturation factors, and sources of HPV information among diverse parents and caregivers. Community organizations purposively recruited participants from African American, African refugee, Hispanic/Latino, American Indian, and Native Hawaiian and Pacific Islander communities for a 21-item survey (N = 228). Ninenty-three of these participants also participated in ten focus groups conducted in three languages. Descriptive statistics and Fishers' Exact Test for Count Data were produced and triangulated with focus group data to provide additional context. Overall, HPV vaccine awareness and knowledge in the five communities was low. This study found that a greater proportion of lower-acculturated participants had heard of HPV through personal networks (foreign-born = 50 % vs US-born = 30 %, p < 0.05; medium acculturation = 60 % vs high acculturation = 26 %, p = 0.01), while greater proportions of US-born participants reported media sources (49 % vs foreign-born = 29 %, p < 0.05). Across communities, healthcare system sources were described as important and preferred sources of HPV information. Hearing about the HPV vaccine from healthcare settings was significantly associated with increased accuracy in HPV vaccine knowledge (p < 0.05). Communities described a need for more in-depth information about the HPV vaccine, and culturally and linguistically appropriate educational materials. Culturally-competent delivery of HPV information through the healthcare system sources may be important in improving knowledge and acceptability of the HPV vaccine among diverse families.

A multisite evaluation of summer camps for children with cancer and their siblings.

Summer camps for pediatric cancer patients and their families are ubiquitous. However, there is relatively little research, particularly studies including more than one camp, documenting outcomes associated with children's participation in summer camp. The current cross-sectional study used a standardized measure to examine the role of demographic, illness, and camp factors in predicting children's oncology camp-related outcomes. In total, 2,114 children at 19 camps participated. Campers were asked to complete the pediatric camp outcome measure, which assesses camp-specific self-esteem, emotional, physical, and social functioning. Campers reported high levels of emotional, physical, social, and self-esteem functioning. There were differences in functioning based on demographic and illness characteristics, including gender, whether campers/siblings were on or off active cancer treatment, age, and number of prior years attending camp. Results indicated that summer camps can be beneficial for pediatric oncology patients and their siblings, regardless of demographic factors (e.g., gender, treatment status) and camp factors (e.g., whether camp sessions included patients only, siblings only, or both). Future work could advance the oncology summer camp literature by examining other outcomes linked to summer camp attendance, using longitudinal designs, and including comparison groups.

Secondary pelvic congestion syndrome: description and radiographic diagnosis.

INTRODUCTION: Pelvic congestion syndrome (PCS) is a complex condition of the pelvic venous system leading to nonspecific pelvic pain that was initially described in females alone. The underlying abnormalities, though diverse, all result in increased pressure in the left gonadal vein which is transmitted retrograde into the pelvic venous system. Our primary aim was to describe our findings of secondary PCS as a distinct entity from primary PCS in that it has an identifiable vascular etiology and is gender nonspecific. We also aimed to assess the adequacy of late-arterial phase CT urography (CTU) as the initial imaging modality in diagnosing and evaluating secondary PCS. MATERIALS AND METHODS: We retrospectively reviewed 59 patients with PCS, 36 males and 23 females ages 24 to 63, from 2000-2011. To maximize opacification, CTU images were taken in the late-arterial phase with a 35-50 second delay after contrast administration. RESULTS: Review of our cases revealed multiple etiologies for PCS, including: Nutcracker syndrome (19 cases), cirrhosis (17), retroaortic left renal vein (11), tumor thrombosis of the IVC (5), portal vein thrombosis (4), renal cell carcinoma with left renal vein thrombosis (2), and left kidney AVF (1). The most common symptom was unexplained chronic pelvic pain. The patients in our series had clearly identifiable vascular flow abnormalities leading to the development of PCS, and were therefore diagnosed as having secondary PCS. All cases were easily identified utilizing CTU to visualize and measure dilation of the left gonadal vein and pelvic varices. This modality also proved valuable in the identification and management of the various underlying causes of secondary PCS. CONCLUSION: Secondary PCS is distinct from primary PCS in that it arises from clearly identifiable vascular flow abnormalities and occurs in both males and females. The diverse set of underlying etiologies, as well as the resulting congested varices, can be reliably and adequately visualized using CTU as the initial imaging modality.

Approaches to treatment of unifocal langerhans cell histiocytosis: is biopsy alone enough?

BACKGROUND: Langerhans cell histiocytosis (LCH) is a variable disorder involving either single bone or multiorgan systems. The most effective treatment of unifocal osseous lesions is debated in the literature. This study describes the treatment approaches for LCH and demonstrates the effectiveness of biopsy in providing symptom resolution. METHODS: Records of 61 patients diagnosed with LCH at a single institution over an 11-year period were reviewed. Thirty-nine patients with biopsy-confirmed diagnoses of unifocal osseous LCH were included in the analysis. At this institution, lesions are surgically treated by incisional biopsy, trocar biopsy, or curettage and grafting. Patients receive chemotherapy on a case-by-case basis, depending on the lesion location and size. A Kaplan-Meier analysis was used to compare time with symptom resolution across treatment groups. RESULTS: In the 39 patients with unifocal osseous LCH, treatment approaches included incisional biopsy (n = 18, 46.15%), trocar biopsy (n = 8, 20.51%), incisional biopsy and chemotherapy (n = 8, 20.51%), and biopsy with bone grafting (n = 5, 12.82%). The median time from biopsy to symptom resolution was 5.43 weeks, with an average length of follow-up of 1.59 years. The median time to symptom resolution was 3.86 weeks with incisional biopsy, 5.43 weeks with biopsy and grafting, 5.64 weeks with trocar biopsy, and 16.57 weeks with biopsy and chemotherapy. Overall, there was a significant difference (P = 0.0262) in the time to symptom resolution across the different treatment approaches. Time to symptom resolution was significantly different between incisional biopsy and chemotherapy treatment compared with the incisional biopsy treatment (P = 0.0027), as well as biopsy with grafting treatment (P = 0.0264). CONCLUSIONS: Symptom resolution occurred rapidly after biopsy and did not significantly differ among patients who received incisional biopsy, trocar biopsy, or biopsy with grafting. Unifocal osseous LCH likely does not require aggressive surgical or medical management. Biopsy alone both confirms the diagnosis and precedes a predictable resolution of symptoms. LEVEL OF EVIDENCE: Level III, retrospective comparative therapeutic study.

Predictors of Women's Intentions to Communicate Updated Genetic Test Results to Immediate and Extended Family Members.

INTRODUCTION: Many individuals who previously received negative genetic test results are eligible for updated testing. This study examined intention to communicate updated genetic test results to relatives in participants who previously received negative genetic test results. METHODS: Women with a personal or family history of breast or ovarian cancer who tested negative for BRCA1/2 before 2013 were enrolled between April 2018 and October 2019. Proportions were calculated to assess intention to communicate updated genetic test results to living immediate family, extended family, and all family. Potential predictors of intentions from the theory of planned behavior (attitudes, subjective norms, perceived behavioral control) were assessed. The three outcomes were analyzed using generalized linear models with a quasi-binomial probability distribution. RESULTS: 110 women completed the baseline assessment prior to updated testing. Participants intended to communicate genetic test results to 90% of immediate family, 51% of extended family, and 66% of all living relatives. Participants with higher subjective norms (aOR = 1.93, 95% CI: 1.08-3.57) had higher intentions to communicate genetic test results to extended family, while participants with more positive attitudes (aOR = 1.27, 95% CI: 1.01-1.60) had higher intentions to communicate to all family. Placing higher importance on genetic information was associated with higher intentions to communicate to immediate family (aOR = 1.40, 95% CI: 1.06-1.83). Lower subjective numeracy was associated with higher intentions to communicate to extended family (aOR = 0.50, 95% CI: 0.32-0.76). CONCLUSION: Attitudes and subjective norms were predictors of intention to communicate updated genetic information to at-risk biological relatives, and predictors may vary by degree of relationship.

Real-Time Electronic Health Record Mortality Prediction During the COVID-19 Pandemic: A Prospective Cohort Study.

BACKGROUND: The SARS-CoV-2 virus has infected millions of people, overwhelming critical care resources in some regions. Many plans for rationing critical care resources during crises are based on the Sequential Organ Failure Assessment (SOFA) score. The COVID-19 pandemic created an emergent need to develop and validate a novel electronic health record (EHR)-computable tool to predict mortality. RESEARCH QUESTIONS: To rapidly develop, validate, and implement a novel real-time mortality score for the COVID-19 pandemic that improves upon SOFA. STUDY DESIGN AND METHODS: We conducted a prospective cohort study of a regional health system with 12 hospitals in Colorado between March 2020 and July 2020. All patients >14 years old hospitalized during the study period without a do not resuscitate order were included. Patients were stratified by the diagnosis of COVID-19. From this cohort, we developed and validated a model using stacked generalization to predict mortality using data widely available in the EHR by combining five previously validated scores and additional novel variables reported to be associated with COVID-19-specific mortality. We compared the area under the receiver operator curve (AUROC) for the new model to the SOFA score and the Charlson Comorbidity Index. RESULTS: We prospectively analyzed 27,296 encounters, of which 1,358 (5.0%) were positive for SARS-CoV-2, 4,494 (16.5%) included intensive care unit (ICU)-level care, 1,480 (5.4%) included invasive mechanical ventilation, and 717 (2.6%) ended in death. The Charlson Comorbidity Index and SOFA scores predicted overall mortality with an AUROC of 0.72 and 0.90, respectively. Our novel score predicted overall mortality with AUROC 0.94. In the subset of patients with COVID-19, we predicted mortality with AUROC 0.90, whereas SOFA had AUROC of 0.85. INTERPRETATION: We developed and validated an accurate, in-hospital mortality prediction score in a live EHR for automatic and continuous calculation using a novel model, that improved upon SOFA. TAKE HOME POINTS: Study Question: Can we improve upon the SOFA score for real-time mortality prediction during the COVID-19 pandemic by leveraging electronic health record (EHR) data?Results: We rapidly developed and implemented a novel yet SOFA-anchored mortality model across 12 hospitals and conducted a prospective cohort study of 27,296 adult hospitalizations, 1,358 (5.0%) of which were positive for SARS-CoV-2. The Charlson Comorbidity Index and SOFA scores predicted all-cause mortality with AUROCs of 0.72 and 0.90, respectively. Our novel score predicted mortality with AUROC 0.94.Interpretation: A novel EHR-based mortality score can be rapidly implemented to better predict patient outcomes during an evolving pandemic.

Real-time electronic health record mortality prediction during the COVID-19 pandemic: a prospective cohort study.

OBJECTIVE: To rapidly develop, validate, and implement a novel real-time mortality score for the COVID-19 pandemic that improves upon sequential organ failure assessment (SOFA) for decision support for a Crisis Standards of Care team. MATERIALS AND METHODS: We developed, verified, and deployed a stacked generalization model to predict mortality using data available in the electronic health record (EHR) by combining 5 previously validated scores and additional novel variables reported to be associated with COVID-19-specific mortality. We verified the model with prospectively collected data from 12 hospitals in Colorado between March 2020 and July 2020. We compared the area under the receiver operator curve (AUROC) for the new model to the SOFA score and the Charlson Comorbidity Index. RESULTS: The prospective cohort included 27 296 encounters, of which 1358 (5.0%) were positive for SARS-CoV-2, 4494 (16.5%) required intensive care unit care, 1480 (5.4%) required mechanical ventilation, and 717 (2.6%) ended in death. The Charlson Comorbidity Index and SOFA scores predicted mortality with an AUROC of 0.72 and 0.90, respectively. Our novel score predicted mortality with AUROC 0.94. In the subset of patients with COVID-19, the stacked model predicted mortality with AUROC 0.90, whereas SOFA had AUROC of 0.85. DISCUSSION: Stacked regression allows a flexible, updatable, live-implementable, ethically defensible predictive analytics tool for decision support that begins with validated models and includes only novel information that improves prediction. CONCLUSION: We developed and validated an accurate in-hospital mortality prediction score in a live EHR for automatic and continuous calculation using a novel model that improved upon SOFA.

Convective Radio Frequency Thermal Therapy for Treatment of Benign Prostatic Hyperplasia: Single Office Experience with 255 Patients over 4 Years.

INTRODUCTION: Convective radio frequency thermal therapy with the Rezum® system is a relatively new treatment for benign prostatic hyperplasia with proven short-term durability. We report an update of previously published data from a single center showing durability through 4 years. METHODS: A retrospective review of 255 patients who underwent the Rezum procedure from a single surgeon was performed, including 25 patients from the Rezum II study, from March 2014 to April 2018. Maximum urinary flow rate, I-PSS (International Prostate Symptom Score), I-PSS-QOL (quality of life), post-void residual, medication use and adverse events were monitored. Data were analyzed at baseline, and 3, 6, 12, 24, 36 and 48 months after treatment. RESULTS: Statistically significant improvement in maximum urinary flow rate (57.2%), I-PSS (54.7%) and I-PSS-QOL (59.2%) appear to be durable through 48 months, with improvement greater than 50% at most recent followup. We report a similarly low reoperation rate compared to the most recent data from the Rezum II study (3.1% vs 4.4%), but with higher rates of urinary tract infection (18.8% vs 3.7%) and urinary retention (15.7% vs 3.7%). Overall satisfaction with the procedure experience (93.9%) and the outcome (90.9%) was high, with 97% of men interviewed recommending the procedure to a friend. In addition, 80% of men were able to stop all medication. CONCLUSIONS: Our experience provides the largest published cohort of patients undergoing this procedure and shows durable improvements in maximum urinary flow rate, I-PSS and I-PSS-QOL through 4 years. Patients outside of the inclusion criteria of Rezum II appear to benefit from the procedure.

Adherence to Oral Medications During Maintenance Therapy Among Children and Adolescents With Acute Lymphoblastic Leukemia: A Medication Refill Analysis.

Adherence to oral medications during maintenance therapy is essential for pediatric patients with acute lymphoblastic leukemia. Self-reported or electronic monitoring of adherence indicate suboptimal adherence, particularly among particular sociodemographic groups. This study used medication refill records to examine adherence among a national sample of pediatric patients with acute lymphoblastic leukemia. Patients in a national claims database, aged 0 to 21 years with a diagnosis of acute lymphoblastic leukemia and in the maintenance phase of treatment, were included. Medication possession ratios were used as measures of adherence. Overall adherence and adherence by sociodemographic groups were examined. Adherence rates were 85% for 6-mercaptopurine and 81% for methotrexate. Adherence was poorer among patients 12 years and older. Oral medication adherence rates were suboptimal and similar to or lower than previously documented rates using other methods of assessing adherence. Refill records offer a promising avenue for monitoring adherence. Additional work to identify groups most at-risk for poor adherence is needed. Nurses are well positioned to routinely monitor for medication adherence and to collaborate with the multidisciplinary team to address barriers to adherence.