Timing and Delivery of Fertility Preservation Information to Transgender Adolescents, Young Adults, and Their Parents.

PURPOSE: This study aimed to examine transgender adolescents and young adults' (AYA) and their parents' preferences regarding fertility preservation (FP) information provision and discussion timing. METHODS: Data were derived from two separate studies: an online survey and semistructured qualitative interviews. Survey data were analyzed using descriptive statistics and interview data using conventional content analysis. RESULTS: Survey participants (AYA: 88% and parents: 93%) preferred gender clinic physicians provide FP information, and nearly one-third endorsed mental health professionals (AYA: 28% and parents: 26%) or fertility specialists (AYA: 23% and parents: 30%). Interview participants' FP discussion timing preferences ranged from the initial clinic visit, follow-up visits, before medical intervention, to mentioning FP early but deferring in-depth discussion to follow-up visits. CONCLUSIONS: Gender clinic physicians, mental health professionals, and fertility specialists should be prepared to discuss FP with transgender AYA and their parents. Opinions varied regarding when to provide FP information; therefore, discussion timing may need to be individualized.

Attitudes Toward Fertility Preservation Among Transgender Youth and Their Parents.

PURPOSE: While gender-affirming hormones (GAH) may impact the fertility of transgender and gender diverse (TGGD) youth, few pursue fertility preservation (FP). The objective of this study is to understand youth and parent attitudes toward FP decision-making. METHODS: This study is a cross-sectional survey of youth and parents in a pediatric, hospital-based gender clinic from April to December 2017. Surveys were administered electronically, containing 34 items for youth and 31 items for parents regarding desire for biological children, willingness to delay GAH for FP, and factors influencing FP decisions. RESULTS: The mean age of youth (n = 64) was 16.8 years, and 64% assigned female at birth; 46 parents participated. Few youth (20%) and parents (13%) found it important to have biological children or grandchildren, and 3% of youth and 33% of parents would be willing to delay GAH for FP. The most common factor influencing youth FP decision-making was discomfort with a body part they do not identify with (69%), and for the parents, whether it was important to their child (61%). In paired analyses, youth and their parents answered similarly regarding youth desire for biological children and willingness to delay GAH for FP. CONCLUSIONS: The majority of TGGD youth and parents did not find having biological offspring important and were not willing to delay GAH for FP. Discomfort with reproductive anatomy was a major influencing factor for youth FP decision-making and their child's wishes was a major factor for parents. Future qualitative research is needed to understand TGGD youth and parent attitudes toward FP and to develop shared decision-making tools.

Tailored medication adherence incentives for high-risk children with asthma: a pilot study.

Objective: While reminder-based electronic monitoring systems have shown promise in enhancing inhaled corticosteroid (ICS) adherence in select populations, more engaging strategies may be needed in families of children with high-risk asthma. This study assesses the acceptability and feasibility of gain-framed ICS adherence incentives in families of urban, minority children with frequent asthma hospitalization.Methods: We enrolled children aged 5-11 years with multiple yearly asthma hospitalizations in a 2-month, mixed methods, ICS adherence incentive pilot study. All participants received inhaler sensors and a smartphone app to track ICS use. During month 1, families received daily adherence reminders and weekly feedback, and children earned up to $1/day for complete adherence. No reminders, feedback, or incentives were provided in month 2. We assessed feasibility and acceptability using caregiver surveys and semi-structured interviews and ICS adherence using electronic monitoring data.Results: Of the 29 families approached, 20 enrolled (69%). Participants were primarily Black (95%), publicly insured (75%), and averaged 2.9 asthma hospitalizations in the prior year. Fifteen of the 16 caregivers (94%) surveyed at month 2 liked the idea of receiving adherence incentives. Mean adherence was significantly higher in month 1 compared with month 2 (80% vs. 33%, mean difference = 47%; 95% CI [33, 61], p < 0.001). Caregivers reported that their competing priorities often limited adherence, while incentives helped motivate child adherence.Conclusions: ICS adherence incentives were acceptable and feasible in a high-risk cohort of children with asthma. Future studies should assess the efficacy of adherence incentives in enhancing ICS adherence in high-risk children.

Health Insurance Coverage of Recommended Gender-Affirming Health Care Services for Transgender Youth: Shopping Online for Coverage Information.

We assessed online health insurance plan indication of coverage and accessibility of information for recommended services for transgender youth (TY). Content analysis was performed for plans used at a pediatric Gender Clinic by reviewing information about coverage of puberty blockers, hormones, masculinizing chest surgery, and counseling. Transgender-specific exclusions and the time required for the research assistant to review each plan's online information were noted. No plan (0%; n=36) indicated coverage of all four categories of recommended services online. Forty-nine percent indicated ≥1 transgender-specific exclusion. The median time required for a research assistant to review online coverage information for each insurance plan was 50 min. Efforts are needed to ensure that online insurance information is accessible and updated in accordance with policy and coverage recommendations for TY.

Controller adherence following hospital discharge in high risk children: A pilot randomized trial of text message reminders.

OBJECTIVE: To assess the feasibility of a mobile health, inhaled corticosteroid (ICS) adherence reminder intervention and to characterize adherence trajectories immediately following severe asthma exacerbation in high-risk urban children with persistent asthma. METHODS: Children aged 2-13 with persistent asthma were enrolled in this pilot randomized controlled trial during an asthma emergency department (ED) visit or hospitalization. Intervention arm participants received daily text message reminders for 30 days, and both arms received electronic sensors to measure ICS use. Primary outcomes were feasibility of sensor use and text message acceptability. Secondary outcomes included adherence to prescribed ICS regimen and 30-day adherence trajectories. Group-based trajectory modeling was used to examine adherence trajectories. RESULTS: Forty-one participants (mean age 5.9) were randomized to intervention (n = 21) or control (n = 20). Overall, 85% were Black, 88% had public insurance, and 51% of the caregivers had a high school education or less. Thirty-two participant families (78%) transmitted medication adherence data; of caregivers who completed the acceptability survey, 25 (96%) chose to receive daily reminders beyond that study interval. Secondary outcome analyses demonstrated similar average daily adherence between groups (intervention = 36%; control = 32%, P = 0.73). Three adherence trajectories were identified with none ever exceeding 80% adherence. CONCLUSIONS: Within a high-risk pediatric cohort, electronic monitoring of ICS use and adherence reminders delivered via text message were feasible for most participants, but there was no signal of effect. Adherence trajectories following severe exacerbation were suboptimal, demonstrating an important opportunity for asthma care improvement.

Validation of the Use of Electronic Health Records for Classification of ADHD Status.

OBJECTIVE: To validate an electronic health record (EHR)-based algorithm to classify ADHD status of pediatric patients. METHOD: As part of an applied study, we identified all primary care patients of The Children's Hospital of Philadelphia [CHOP] health care network who were born 1987-1995 and residents of New Jersey. Patients were classified with ADHD if their EHR indicated an International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) diagnosis code of "314.x" at a clinical visit or on a list of known conditions. We manually reviewed EHRs for ADHD patients ( n = 2,030) and a random weighted sample of non-ADHD patients ( n = 807 of 13,579) to confirm the presence or absence of ADHD. RESULTS: Depending on assumptions for inconclusive cases, sensitivity ranged from 0.96 to 0.97 (95% confidence interval [CI] = [0.95, 0.97]), specificity from 0.98 to 0.99 [0.97, 0.99], and positive predictive value from 0.83 to 0.98 [0.81, 0.99]. CONCLUSION: EHR-based diagnostic codes can accurately classify ADHD status among pediatric patients and can be used by large-scale epidemiologic and clinical studies with high sensitivity and specificity.

Perceived Access to Outpatient Care and Hospital Reutilization Following Acute Respiratory Illnesses.

OBJECTIVE: Efforts to decrease hospital revisits often focus on improving access to outpatient follow-up. Our objective was to assess the relationship between perceived access to timely office-based care and subsequent 30-day revisits following hospital discharge for 4 common respiratory illnesses. METHODS: This was a prospective cohort study of children 2 weeks to 16years admitted to 5 US children's hospitals for asthma, bronchiolitis, croup, or pneumonia between July 2014 and June 2016. Hospital and emergency department (ED) (in the case of croup) admission surveys administered to caregivers included the Consumer Assessments of Healthcare Providers and Systems Timely Access to Care. Access composite scores (range 0-100, with greater scores indicating better access) were linked with 30-day ED revisits and inpatient readmissions from the Pediatric Health Information System. The relationship between access to timely care and repeat utilization was assessed using multivariable logistic regression adjusting for demographics, hospitalization, and home/outpatient factors. RESULTS: Of the 2438 children enrolled, 2179 (89%) reported an office visit in the previous 6 months. Average access composite score was 52.0 (standard deviation, 36.3). In adjusted analyses, greater access scores were associated with greater odds of 30-day ED revisits (odds ratio [OR] = 1.07; 95% confidence interval [CI], 1.02-1.13)-particularly for croup (OR = 1.17; 95% CI, 1.02-1.36)-but not inpatient readmissions (OR = 1.02; 95% CI, 0.96-1.09). CONCLUSIONS: Perceived access to timely office-based care was associated with significantly greater odds of subsequent ED revisit. Focusing solely on enhancing timely access to care following discharge for common respiratory illnesses may be insufficient to prevent repeat utilization.

Utility of Single-Cell Genomics in Diagnostic Evaluation of Prostate Cancer.

A distinction between indolent and aggressive disease is a major challenge in diagnostics of prostate cancer. As genetic heterogeneity and complexity may influence clinical outcome, we have initiated studies on single tumor cell genomics. In this study, we demonstrate that sparse DNA sequencing of single-cell nuclei from prostate core biopsies is a rich source of quantitative parameters for evaluating neoplastic growth and aggressiveness. These include the presence of clonal populations, the phylogenetic structure of those populations, the degree of the complexity of copy-number changes in those populations, and measures of the proportion of cells with clonal copy-number signatures. The parameters all showed good correlation to the measure of prostatic malignancy, the Gleason score, derived from individual prostate biopsy tissue cores. Remarkably, a more accurate histopathologic measure of malignancy, the surgical Gleason score, agrees better with these genomic parameters of diagnostic biopsy than it does with the diagnostic Gleason score and related measures of diagnostic histopathology. This is highly relevant because primary treatment decisions are dependent upon the biopsy and not the surgical specimen. Thus, single-cell analysis has the potential to augment traditional core histopathology, improving both the objectivity and accuracy of risk assessment and inform treatment decisions.Significance: Genomic analysis of multiple individual cells harvested from prostate biopsies provides an indepth view of cell populations comprising a prostate neoplasm, yielding novel genomic measures with the potential to improve the accuracy of diagnosis and prognosis in prostate cancer. Cancer Res; 78(2); 348-58. ©2017 AACR.

Association Between NCAP Ratings and Real-World Rear Seat Occupant Risk of Injury.

OBJECTIVE: Several studies have evaluated the correlation between U.S. or Euro New Car Assessment Program (NCAP) ratings and injury risk to front seat occupants, in particular driver injuries. Conversely, little is known about whether NCAP 5-star ratings predict real-world risk of injury to restrained rear seat occupants. The NHTSA has identified rear seat occupant protection as a specific area under consideration for improvements to its NCAP. In order to inform NHTSA's efforts, we examined how NCAP's current 5-star rating system predicts risk of moderate or greater injury among restrained rear seat occupants in real-world crashes. METHODS: We identified crash-involved vehicles, model year 2004-2013, in NASS-CDS (2003-2012) with known make and model and nonmissing occupant information. We manually matched these vehicles to their NCAP star ratings using data on make, model, model year, body type, and other identifying information. The resultant linked NASS-CDS and NCAP database was analyzed to examine associations between vehicle ratings and rear seat occupant injury risk; risk to front seat occupants was also estimated for comparison. Data were limited to restrained occupants and occupant injuries were defined as any injury with a maximum Abbreviated Injury Scale (AIS) score of 2 or greater. RESULTS: We linked 95% of vehicles in NASS-CDS to a specific vehicle in NCAP. The 18,218 vehicles represented an estimated 6 million vehicles with over 9 million occupants. Rear seat passengers accounted for 12.4% of restrained occupants. The risk of injury in all crashes for restrained rear seat occupants was lower in vehicles with a 5-star driver rating in frontal impact tests (1.4%) than with 4 or fewer stars (2.6%, P =.015); results were similar for the frontal impact passenger rating (1.3% vs. 2.4%, P =.024). Conversely, side impact driver and passenger crash tests were not associated with rear seat occupant injury risk (driver test: 1.7% for 5-star vs. 1.8% for 1-4 stars; passenger test: 1.6% for 5 stars vs 1.8% for 1-4 stars). CONCLUSIONS: Current frontal impact test procedures provide some degree of discrimination in real-world rear seat injury risk among vehicles with 5 compared to fewer than 5 stars. However, there is no evidence that vehicles with a 5-star side impact passenger rating, which is the only crash test procedure to include an anthropomorphic test dummy (ATD) in the rear, demonstrate lower risks of injury in the rear than vehicles with fewer than 5 stars. These results support prioritizing modifications to the NCAP program that specifically evaluate rear seat injury risk to restrained occupants of all ages.

Design and Conduct of an Internet-Based Preconception Cohort Study in North America: Pregnancy Study Online.

BACKGROUND: We launched the Boston University Pregnancy Study Online (PRESTO) to assess the feasibility of carrying out an Internet-based preconception cohort study in the US and Canada. METHODS: We recruited female participants age 21-45 and their male partners through Internet advertisements, word of mouth, and flyers. Female participants were randomised with 50% probability to receive a subscription to FertilityFriend.com (FF), a web-based programme that collects real-time data on menstrual characteristics. We compared recruitment methods within PRESTO, assessed the cost-efficiency of PRESTO relative to its Danish counterpart (Snart-Gravid), and validated retrospectively reported date of last menstrual period (LMP) against the FF data. RESULTS: After 99 weeks of recruitment (2013-15), 2421 women enrolled; 1384 (57%) invited their male partners to participate, of whom 693 (50%) enrolled. Baseline characteristics were balanced across randomisation groups. Cohort retention was similar among those randomised vs. not randomised to FF (84% vs. 81%). At study enrollment, 56%, 22%, and 22% couples had been trying to conceive for < 3, 3-5, and ≥ 6 months, respectively. The cost per subject enrolled was $146 (2013 US$), which was similar to our companion Danish study and half that of a traditional cohort study. Among FF users who conceived, > 97% reported their LMP on the PRESTO questionnaire within 1 day of the LMP recorded via FF. CONCLUSIONS: Use of the Internet as a method of recruitment and follow-up in a North American preconception cohort study was feasible and cost-effective.

Functional outcomes following robotic prostatectomy using athermal, traction free risk-stratified grades of nerve sparing.

OBJECTIVE: To report our unique approach for individualizing robotic prostate cancer surgery by risk stratification and sub classification of the periprostatic space into 4 distinct compartments, and thus performing 4 precise different grades of nerve sparing based on neurosurgical principles and to present updated potency and continence outcomes data of patients undergoing robotic-assisted laparoscopic prostatectomy (RALP) using our risk-stratified approach based on layers of periprostatic fascial dissection. PATIENTS AND METHODS: (1) Between January 2005 and December 2010, 2,536 men underwent RALP by a single surgeon at our institution. (2) Included patients were those with ≥ 1-year follow-up and were preoperatively continent and potent, defined as having a SHIM questionnaire score of >21; thus, the final number of patient in the study cohort was 1,335. (3) Postoperative potency was defined as the ability to have successful intercourse (score of ≥ 4 on question 2 of the SHIM); continence was defined as the use of no pads per 24 h. RESULTS: (1) The potency and continence for NS grades 1, 2, 3, and 4 were found to be 90.6, 76.2, 60.5, and 57.1 % (P < 0.001) and 98, 93.2, 90.1, and 88.9 % (P < 0.001), respectively. (2) The overall PSM rates for patients with NS grades 1, 2, 3, and 4 were 10.5, 7, 5.8, and 4.8 %, respectively (P = 0.064). CONCLUSIONS: The study found a correlation between risk-stratified grades of NS technique and continence and potency. Patients with lesser grades of NS had higher rates of potency and continence.

Effect of a risk-stratified grade of nerve-sparing technique on early return of continence after robot-assisted laparoscopic radical prostatectomy.

BACKGROUND: The impact of nerve sparing (NS) on urinary continence recovery after robot-assisted laparoscopic radical prostatectomy (RALP) has yet to be defined. OBJECTIVE: To evaluate the effect of a risk-stratified grade of NS technique on early return of urinary continence. DESIGN, SETTING, AND PARTICIPANTS: Data were collected from 1546 patients who underwent RALP by a single surgeon at a tertiary care center from December 2008 to October 2011. Patients were categorized preoperatively by a risk-stratified approach into risk grades 1-4, with risk grade 1 patients more likely to receive NS grade 1 or complete hammock preservation. This categorization was also conducted for risk grades 2-4, with grade 4 patients receiving a non-NS procedure. INTERVENTION: Risk-stratified grading of NS RALP. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: Univariate and multivariate analysis identified predictors of early return of urinary continence, defined as no pad use at ≤ 12 wk postoperatively. RESULTS AND LIMITATIONS: Early return of continence was achieved by 791 of 1417 men (55.8%); of those, 199 of 277 (71.8%) were in NS grade 1, 440 of 805 (54.7%) were in NS grade 2, 132 of 289 (45.7%) were in NS grade 3, and 20 of 46 (43.5%) were in NS grade 4 (p<0.001). On multivariate analysis, better NS grade was a significant independent predictor of early return of urinary continence when NS grade 1 was the reference variable compared with NS grade 2 (p<0.001; odds ratio [OR]: 0.46), NS grade 3 (p<0.001; OR: 0.35), and NS grade 4 (p=0.001; OR: 0.29). Lower preoperative International Prostate Symptom Score (p=0.001; OR: 0.97) and higher preoperative Sexual Health Inventory for Men score (p=0.002; OR: 1.03) were indicative of early return of urinary continence. Positive surgical margin rates were 7.2% (20 of 277) of grade 1 cases, 7.6% (61 of 805) of grade 2 cases, 7.6% (22 of 289) of grade 3 cases, and 17.4% (8 of 46) of grade 4 cases (p=0.111). Extraprostatic extension occurred in 6.1% (17 of 277) of NS grade 1 cases, 17.5% (141 of 805) of NS grade 2 cases, 42.5% (123 of 289) of NS grade 3 cases, and 63% (29 of 46) of NS grade 4 cases (p<0.001). Some limitations of the study are that the study was not randomized, grading of NS was subjective, and possible selection bias existed. CONCLUSIONS: Our study reports a correlation between risk-stratified grade of NS technique and early return of urinary continence as patients with a lower grade (higher degree) of NS achieved an early return of urinary continence without compromising oncologic safety.

Surgical strategies to promote early continence recovery after robotic radical prostatectomy.

OBJECTIVES: Over 90% of all prostate cancer patients are diagnosed at a stage when the disease is organ-confined and potentially curable. Currently >60% of all prostate cancer surgeries in the United States are performed using the robotic approach. We review the current literature evaluating the technical advances to optimize continence recovery following robotic prostatectomy. METHODS: Recent studies suggest that the several technical nuances during robotic prostatectomy can result in earlier continence recovery in patients without compromising the oncologic outcome. The key is in delicate handling of tissues, reducing trauma, preserving support structures and restoring post-operative anatomy as close as possible to pre-operative anatomy. There should also be standardization in assessment of continence recovery. CONCLUSION: Much progress has been achieved in elucidating the anatomic, physiologic and neural basis of the male continence mechanism, resulting in novel adaptations of the conventional approach to radical prostatectomy with the aim of preserving continence and accelerating its return. Various principles for augmenting continence return have been proposed which have been evaluated in series of open, laparoscopic and robotic-assisted radical prostatectomy. Going forward, we foresee a paradigm shift from individual techniques toward a unified approach of interwoven principles aimed at preserving and augmenting the functional and innervative anatomy of the continence mechanism.

Estrategias quirúrgicas para fomentar una temprana recuperación de la continencia después de prostatectomía radical robótica / Surgical strategies to promote early continence recovery after robotic radical prostatectomy

OBJETIVO: Más del 90% de los pacientes con cáncer de próstata se diagnostican en una fase órgano-confinado y es potencialmente curable. En la actualidad >60% de todas las cirugías de cáncer de próstata en los Estados Unidos se realizan mediante abordaje robótico. Se revisa la literatura actual valorando los avances técnicos para optimizar la recuperación de la continencia tras la prostatectomía robótica. MÉTODOS: Estudios recientes sugieren que varios matices técnicos durante la prostatectomía robótica pueden dar lugar a la temprana recuperación de la continencia en los pacientes sin comprometer el resultado oncológico. La clave está en la manipulación delicada de los tejidos, reduciendo el trauma, preservando las estructuras de apoyo y restaurando la anatomía post-operatoria lo máximo posible a la anatomía pre-operatoria. También debe existir un estándar en la valoración de la recuperación de la continencia. CONCLUSIÓN: Se ha progresado mucho aclarando las bases anatómicas, fisiológicas y neurológicas del mecanismo de continencia masculina, dando lugar a nuevas adaptaciones del abordaje convencional de la prostatectomía radical con objeto de preservar la continencia y la aceleración de su recuperación. Se han propuesto varios principios para aumentar el retorno de la continencia, que han sido valorados en una serie de prostatectomía radical abierta, laparoscópica y robótica. De cara al futuro, se prevé un cambio de paradigma de las técnicas individuales hacia un abordaje unificado de principios entrelazados destinados a preservar y aumentar la anatomía funcional e inervada del mecanismo de continencia

OBJECTIVES: Over 90% of all prostate cancer patients are diagnosed at a stage when the disease is organ-confined and potentially curable. Currently >60% of all prostate cancer surgeries in the United States are performed using the robotic approach. We review the current literature evaluating the technical advances to optimize continence recovery following robotic prostatectomy. METHODS: Recent studies suggest that the several technical nuances during robotic prostatectomy can result in earlier continence recovery in patients without compromising the oncologic outcome. The key is in delicate handling of tissues, reducing trauma, preserving support structures and restoring post-operative anatomy as close as possible to pre-operative anatomy. There should also be standardization in assessment of continence recovery. CONCLUSION: Much progress has been achieved in elucidating the anatomic, physiologic and neural basis of the male continence mechanism, resulting in novel adaptations of the conventional approach to radical prostatectomy with the aim of preserving continence and accelerating its return. Various principles for augmenting continence return have been proposed which have been evaluated in series of open, laparoscopic and robotic-assisted radical prostatectomy. Going forward, we foresee a paradigm shift from individual techniques toward a unified approach of interwoven principles aimed at preserving and augmenting the functional and innervative anatomy of the continence mechanism(AU)