School-age adopted children's early responses to remote schooling during COVID-19.

Objective: This mixed-methods exploratory study sought to address the experiences of 89 adoptive parents (heterosexual, lesbian, and gay) in the United States with school-age children in relation to the transition to remote schooling and their children's mental health during the early part of the COVID-19 pandemic. Background: The transition to remote schooling and associated confinement during the COVID-19 pandemic presents challenges for families, particularly when children are struggling with mental health and learning challenges. Methods: Data were collected via an online survey between May and June 2020. Before the pandemic, almost half of the children received special education services. Results: Findings revealed that although a minority of children were doing well with remote schooling, the majority were struggling due to lack of motivation and an inability to work independently. Some parents voiced challenges with teacher communication and inconsistencies across classes and were overwhelmed by the demands of their new role as proctor/teacher. Some were dissatisfied with how children's school services had been implemented and noted difficulties with the online format of various services (e.g., therapy was less engaging). Regarding children's mental health, half of parents said it had stayed the same, one third said it had worsened, and the remainder said it had improved. The mental health of children adopted via foster care seemed to have benefited from the additional time spent at home. Yet most children were described as struggling in part due to social isolation and loss of routine, which manifested in a variety of ways, including anxiety, schoolwork avoidance, and boundary testing. Most parents tried to show patience, tolerance, and reassurance, but more than one third reported stress and frustration associated with not knowing how to best support their children. Conclusion: The transition to remote schooling during COVID-19 may be especially challenging for adoptive families and other families whose children have higher levels of need. Implications: Findings have implications for parents, teachers, school social workers and psychologists, and other professionals who work with children and families.

Transgender Graduate Students: Considerations, Tensions, and Decisions in Choosing a Graduate Program.

This study explored how 30 trans graduate students made decisions regarding graduate school. Specifically, it examined how the students chose their graduate program and, secondarily, how they chose their field, what led them to apply to graduate school, and their outness during the application process. In selecting a program, participants considered contextual and personal factors that encompassed commonly cited academic and pragmatic circumstances (e.g., reputation; cost) and factors salient to their gender identity, including state and university climate. Participants identified a number of tensions in choosing a program (e.g., whether to prioritize academic factors over program climate)-although some could not prioritize program climate because their field (e.g., STEM) was not LGBTQ savvy. In applying to graduate school, participants weighed the benefits of being out as trans (e.g., authenticity; finding a "good fit") and risks (e.g., discrimination). Findings have implications for higher education administrators, career counselors, clinicians, and researchers.

Direct and Indirect Costs of Infectious Conjunctivitis in a Commercially Insured Population in the United States.

PURPOSE: To assess the direct and indirect costs of infectious conjunctivitis and quantify medical costs due to conjunctivitis transmission in families. METHODS: In this retrospective claims analysis from the OptumHealth Care Solutions, Inc. database (1998-2016), beneficiaries with or without at least one diagnosis of infectious conjunctivitis were identified. Direct and indirect costs (in 2016 US$) during the 60 days post conjunctivitis diagnosis (or imputed date for controls) were compared using cost differences in linear regressions. For transmission cost analysis, the total cost of each conjunctivitis episode was the sum of the primary episode (seed patient) and the secondary episode (infected family members) costs. A generalized estimating equation model adjusted for seed patient characteristics was used to assess the impact of number and rate of transmissions on episode cost. RESULTS: Health care resource utilization and direct costs were significantly higher for patients with conjunctivitis (n=1,002,188) versus controls (n=4,877,210): 1.67 all-cause visits per person per month (PPPM) versus 0.79 visits PPPM, respectively; total mean direct cost of $396.04 PPPM versus $289.63 PPPM, respectively. The cost of medically related absenteeism was $105.42 (95% confidence interval [CI], $104.18-$106.75) higher for patients with conjunctivitis than for controls. Episode cost, without transmission due to seed patient, was $669.43 (95% CI, $654.67-$684.85); it increased with each additional infected family member and with increased infection transmission time between family members. CONCLUSION: Conjunctivitis was associated with a notable economic burden in terms of direct medical costs and medically related absenteeism. Family health care costs increased with transmission time and with each family member infected with conjunctivitis.

Conceived Through Rape/Incest? Adoptive Parents' Experiences Managing Uncertainty and Disclosure Surrounding their Children's Origins.

Adoptive parents may be placed with children conceived under difficult circumstances, such as via rape or incest. At the same time, adoptive parents are generally encouraged to communicate openly with their children about their adoption stories and birth families. No research has examined the experiences of parents who adopt children who were conceived through rape or incest. This exploratory study examines how parents discuss their decision-making when adopting children conceived via rape or incest, how they manage varying levels of uncertainty about their children's origins, and whether and how they plan to disclose this information to children. The researchers used thematic analysis to examine the experiences of 11 couples (22 parents) interviewed at four time points after adopting children who were reportedly conceived via rape or incest. Findings revealed that even soon after adopting, parents discussed the need to eventually talk to their children about their conception circumstances. Parents generally struggled to determine how and when to disclose this information, particularly when they felt uncertain about the veracity of the conception stories they had been told. Some hoped to rely on professionals or birth mothers to guide them in these communications. Findings have implications for supporting adoptive families as they navigate the complexity of managing sensitive information and uncertainty when adopting children conceived through rape or incest. Practitioners should provide ongoing guidance to adoptive parents about how and when to disclose developmentally appropriate information to children about difficult conception circumstances.

Los padres adoptivos pueden recibir niños concebidos en circunstancias difíciles, por ejemplo, por violación o incesto. Al mismo tiempo, a los padres adoptivos generalmente se los anima a comunicarse abiertamente con sus hijos acerca de las historias sobre su adopción y sus familias biológicas. Ninguna investigación ha analizado las experiencias de los padres que adoptan a niños que fueron concebidos por violación o incesto. Este estudio exploratorio analiza cómo los padres debaten su toma de decisiones cuando adoptan a niños concebidos mediante violación o incesto, cómo manejan los diversos niveles de incertidumbre acerca de los orígenes de sus hijos, y si planean revelar esta información a los niños y cómo lo harán. Los investigadores utilizaron el análisis temático para analizar las experiencias de 11 parejas (22 padres) entrevistadas en cuatro momentos específicos después de adoptar a niños que supuestamente fueron concebidos por violación o incesto. Los resultados revelaron que incluso poco después de adoptar, los padres analizaron la necesidad de hablar finalmente con sus hijos acerca de las circunstancias de su concepción. A los padres generalmente les costó decidir cómo y cuándo revelar esta información, particularmente cuando se sentían inseguros acerca de la veracidad de las historias sobre la concepción que les habían contado. Algunos esperaban contar con profesionales o con las madres biológicas para que los guíen en estas comunicaciones. Los hallazgos tienen consecuencias para el apoyo a familias adoptivas que sortean la complejidad de manejar información sensible y la incertidumbre cuando adoptan a niños concebidos por violación o incesto. Los profesionales deberían proporcionar orientación constante a los padres adoptivos sobre cómo y cuándo revelar a sus hijos información adecuada para el desarrollo acerca de las circunstancias difíciles de su concepción.

Patient Preferences and Therapeutic Satisfaction with Topical Agents for Rosacea: A Survey-Based Study.

BACKGROUND: Rosacea is a chronic inflammatory skin disorder that primarily affects the convexities of the central face. Depending on the severity and type of rosacea, physicians may prescribe interventions such as behavioral changes, laser and intense pulsed light, as well as various pharmacologic therapies, including topical agents. The impact of side effects associated with topical treatments for rosacea on patient preferences and treatment satisfaction is not well-documented. OBJECTIVE: To assess patients' concerns, treatment satisfaction, and quality of life (QOL) associated with topical treatments for rosacea. METHODS: Patients were identified for participation in a one-time survey from electronic medical records between 2010 and 2015 from the largest privately held and physician-run multispecialty group practice in Massachusetts. Patients were eligible to participate in the survey if they were aged ≥18 years and had ≥1 diagnoses of rosacea, ≥1 prescriptions for topical metronidazole gel/cream or azelaic acid gel, ≥6 months of follow-up, and an active treatment record in 2014. Treatment-related concerns and their importance were assessed using a questionnaire developed for this study. Treatment satisfaction and QOL were evaluated using the Treatment Satisfaction with Medicines Questionnaire (SATMED-Q) and the Dermatology Life Quality Index (DLQI), respectively. RESULTS: Of the 900 eligible patients surveyed, 216 (24%) responded. Among the responders, 122 reported currently using a topical rosacea treatment. The most common treatment-related concerns were efficacy (64.8%), skin dryness (18.4%), unspecified side effects (9.6%), burning sensation (8.8%), and application technique (8.0%). The treatment-related concerns that were assessed as most important by responders included efficacy (mean score 9.1, on a 10-point scale), soreness (7.6), itching (7.5), burning (7.4), and dryness (7.3). Averaged across all the responders, treatment satisfaction was rated as neutral (mean SATMED-Q score, 56.5), whereas the impact of rosacea on QOL was minimal (mean DLQI score, 2.7). Increasing dryness was significantly associated with worsening QOL, and trends toward significance were observed for increasing soreness, itching, and burning sensations. CONCLUSIONS: The survey results suggest a need for novel topical therapies for patients with rosacea that have increased efficacy and tolerability, which may improve patient satisfaction and QOL.

Epidemiologic and clinical characteristics of nontransfusion-dependent thalassemia in the United States.

BACKGROUND: Nontransfusion-dependent thalassemia (NTDT) refers to a diverse group of thalassemia mutations and clinical phenotypes that do not require chronic transfusions. It is increasingly prevalent in the United States. PROCEDURE: This study reviews the epidemiology and clinical characteristics of 138 patients with NTDT treated at four US thalassemia centers from 1997 to 2014. Data on laboratory results, transfusions, and clinical complications were collected from patient charts. RESULTS: Overall, 84 patients with α-thalassemia (62 deletional hemoglobin H; 22 nondeletional hemoglobin H), 39 with ß-thalassemia (26 with homozygous or double heterozygous ß mutations; 13 with single ß mutations with or without α triplication), and 15 with E/ß-thalassemia (12 E/ß0 ; three E/ß+ ) were identified. At study entry, the median age for patients with α-thalassemia was 2.3 years; 9.2 years for patients with ß-thalassemia and 2.2 years for patients with E/ß-thalassemia. Most patients with α-thalassemia were Asian. Patients with ß-thalassemia were predominantly Caucasian (46%) or of African descent (36%). Twenty percent of patients were born outside the United States and 5% were transfused before immigration. Complications varied by genotype and age. Individuals with nondeletional hemoglobin H were severely affected and, despite their young age, had many complications. Iron overload increased with age and was more common in patients who received transfusions. CONCLUSIONS: NTDT in the United States is a multi-ethnic disease with different genotypic mutations and phenotypic manifestations. A higher than expected proportion of patients was Black/African American. NTDT-related complications are common and increase with age, supporting a need for early diagnosis.

Efficacy of Ponatinib Versus Earlier Generation Tyrosine Kinase Inhibitors for Front-line Treatment of Newly Diagnosed Philadelphia-positive Acute Lymphoblastic Leukemia.

INTRODUCTION: Complete molecular response (CMR) and 2- and 3-year overall survival (OS) were compared for patients with newly diagnosed Philadelphia-positive acute lymphoblastic leukemia (Ph+ ALL) who had undergone front-line combination chemotherapy plus ponatinib versus combination therapy plus earlier generation tyrosine kinase inhibitors (TKIs; imatinib, dasatinib, and nilotinib). PATIENTS AND METHODS: We identified 26 Ph+ ALL studies: 25 of earlier generation TKIs and 1 of ponatinib. The outcomes from studies of combination chemotherapy plus earlier generation TKIs were summarized using pooled estimates with 95% confidence intervals (CIs) from a random-effects meta-analysis. A binomial distribution was assumed to calculate the 95% CIs for the results from the single-arm combination chemotherapy plus ponatinib trial. Adjusted logistic meta-regression analyses were used to compare the outcomes between the TKI groups. RESULTS: The percentage of patients achieving a CMR was greater with combination chemotherapy plus ponatinib (79%) than the pooled percentage of patients achieving a CMR with combination chemotherapy plus earlier generation TKIs (34%). Greater OS was observed with ponatinib compared with the pooled OS for earlier generation TKIs (2-year, 83% vs. 58%; 3-year, 79% vs. 50%). Odds ratios for ponatinib versus earlier generation TKIs were 6.09 (95% CI, 1.16-31.90; P = .034) for CMR, 3.70 (95% CI, 0.93-14.73; P = .062) for 2-year OS, and 4.49 (95% CI, 1.00-20.13; P = .050) for 3-year OS. CONCLUSION: Ponatinib plus chemotherapy might be associated with better outcomes than chemotherapy with earlier generation TKIs in patients with newly diagnosed Ph+ ALL.

Stroke risk reduction outweighed bleeding risk increase from vitamin K antagonist treatment among nonvalvular atrial fibrillation patients with high stroke risk and low bleeding risk.

OBJECTIVE: Warfarin is widely used for stroke prevention in patients with nonvalvular atrial fibrillation (NVAF). We compared the rates of stroke and major bleeding in NVAF patients with a high stroke risk and low bleeding risk profile during warfarin treated (W+) and warfarin untreated (W-) periods. METHOD: Insurance claims from six commercial, Medicaid or Medicare databases were analyzed from 2000 to 2014. NVAF patients treated with warfarin, with a CHADS2/CHA2DS2-VASc score ≥2, and an ATRIA score ≤3 at baseline were identified. Incidence rate ratios (IRRs) of stroke and major bleeding were calculated for W + versus W- episodes of person-time, as well as for first 30 days versus beyond 30 days of W + episodes. RESULTS: Among 316,145 patients, anticoagulant prophylaxis with warfarin significantly reduced stroke risk, with IRRs ranging from 0.48 (95% CI: 0.46-0.51) to 0.80 (95% CI: 0.70-0.91), and increased major bleeding risk, with IRRs ranging from 1.13 (95% CI: 1.10-1.15) to 1.95 (95% CI: 1.10-3.45). Stroke and major bleeding rates were higher during the first 30 days of W + than beyond. CONCLUSION: In NVAF patients at high risk for stroke and low risk for bleeding, our data confirm the effectiveness of anticoagulation for stroke prevention. The decrease in stroke risk of anticoagulation may outweigh the risk of major bleeding events, particularly among elderly patients. Potential risks of warfarin during initiation warrant attention, especially among patients who stop and start therapy repeatedly.

Continuous prophylaxis with recombinant factor IX Fc fusion protein and conventional recombinant factor IX products: comparisons of efficacy and weekly factor consumption.

BACKGROUND: Continuous prophylaxis for patients with hemophilia B requires frequent injections that are burdensome and that may lead to suboptimal adherence and outcomes. Hence, therapies requiring less-frequent injections are needed. In the absence of head-to-head comparisons, this study compared the first extended-half-life-recombinant factor IX (rFIX) product-recombinant factor IX Fc fusion protein (rFIXFc)-with conventional rFIX products based on annualized bleed rates (ABRs) and factor consumption reported in studies of continuous prophylaxis. METHODS: This study compared ABRs and weekly factor consumption rates in clinical studies of continuous prophylaxis treatment with rFIXFc and conventional rFIX products (identified by systematic literature review) in previously-treated adolescents and adults with moderate-to-severe hemophilia B. Meta-analysis was used to pool ABRs reported for conventional rFIX products for comparison. Comparisons of weekly factor consumption were based on the mean, reported or estimated from the mean dose per injection. RESULTS: Five conventional rFIX studies (injections 1 to >3 times/week) met the criteria for comparison with once-weekly rFIXFc reported by the B-LONG study. The pooled mean ABR for conventional rFIX was slightly higher than but comparable to rFIXFc (difference=0.71; p = 0.210). Weekly factor consumption was significantly lower with rFIXFc than in conventional rFIX studies (difference in means = 42.8-74.5 IU/kg/week [93-161%], p < 0.001). CONCLUSION: Comparisons of clinical study results suggest weekly injections with rFIXFc result in similar bleeding rates and significantly lower weekly factor consumption compared with more-frequently-injected conventional rFIX products. The real-world effectiveness of rFIXFc may be higher based on results from a model of the impact of simulated differences in adherence.

Implementation and Operational Research: Risk Factors of Loss to Follow-up Among HIV-Positive Pediatric Patients in Dar es Salaam, Tanzania.

OBJECTIVE: To identify risk factors for loss to follow-up (LTFU) in an HIV-infected pediatric population in Dar es Salaam, Tanzania, between 2004 and 2011. DESIGN: Longitudinal analysis of 6236 HIV-infected children. METHODS: We conducted a prospective cohort study of 6236 pediatric patients enrolled in care and treatment in Dar es Salaam from October 2004 to September 2011. LTFU was defined as missing a clinic visit for >90 days for patients on ART and for >180 days for patients in care and monitoring. The relationship of baseline and time-varying characteristics to the risk of LTFU was examined using a Cox proportional hazards model. RESULTS: A total of 2130 children (34%) were LTFU over a median follow-up of 16.7 months (interquartile range, 3.4-36.9). Factors independently associated with a higher risk of LTFU were age ≤2 years (relative risk [RR] = 1.59, 95% CI: 1.40 to 1.80), diarrhea at enrollment (RR = 1.20, 95% CI: 1.03 to 1.41), a low mid-upper arm circumference for age (RR = 1.20, CI: 1.05 to 1.37), eating protein-rich foods ≤3 times a week (RR = 1.39, 95% CI: 1.05 to 1.90), taking cotrimoxazole (RR = 1.39, 95% CI: 1.06 to 1.81), initiating onto antiretrovirals (RR = 1.37, 95% CI: 1.17 to 1.61), receiving treatment at a hospital instead of a local facility (RR = 1.39, 95% CI: 1.06 to 1.41), and starting treatment in 2006 or later (RR = 1.10, 95% CI: 1.04 to 1.16). CONCLUSIONS: Health workers should be aware of pediatric patients who are at a greatest risk of LTFU, such as younger and undernourished patients, so that they can proactively counsel families about the importance of visit adherence. Findings support decentralization of HIV care to local facilities as opposed to hospitals.