Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities.

LAY ABSTRACT: Autistic young adults with intellectual disabilities want to be autonomous but are less autonomous than other people. However, they can be autonomous with appropriate support. We wanted to learn how we can support autistic adults with intellectual disabilities to be more autonomous. We designed our study with help from five autistic community partners to make sure the research was relevant to autistic people and would improve their lives. We talked with eight autistic young adults with intellectual disabilities about autonomy. We defined "talk" as verbal language, as well as non-verbal cues such as body language, facial expressions, vocalizations, and laughter. We did art projects and played games while we talked. We met in small groups over multiple sessions. Our participants told us that being autonomous meant being able to be themselves. They told us three main ways to support their autonomy: (1) having choice and control, (2) being able to communicate in their own way, and (3) being in a safe environment. Families, support staff, and caregivers can use this information to help autistic young adults with intellectual disabilities to be autonomous.

Effect of Ergocalciferol on ß-Cell Function in New-Onset Type 1 Diabetes: A Secondary Analysis of a Randomized Clinical Trial.

This secondary analysis of a randomized clinical trial evaluates the effectiveness of ergocalciferol vs placebo in youths with newly diagnosed type 1 diabetes.

Clinical and cortical trajectories in non-fluent primary progressive aphasia and Alzheimer's disease: A role for emotion processing.

OBJECTIVES: To examine the clinical trajectories and neural correlates of cognitive and emotion processing changes in the non-fluent/agrammatic (nfvPPA) and the logopenic (lvPPA) variants of primary progressive aphasia (PPA). DESIGN: Observational case-control longitudinal cohort study. SETTING: Research clinic of frontotemporal dementia. PARTICIPANTS: This study recruited 29 non-semantic PPA patients (15 nfvPPA and 14 lvPPA) and compared them with 15 Alzheimer's disease (AD) patients and 14 healthy controls. MEASUREMENTS: Participants completed an annual assessment (median = 2 years; range = 1-5 years) of general cognition, emotion processing and structural MRI. Linear mixed effects models investigated clinical and imaging trajectories between groups. RESULTS: Over time, lvPPA showed the greatest cognitive deterioration. In contrast, nfvPPA showed significant decline in emotion recognition, whereas AD showed preserved emotion recognition, even with disease progression. Importantly, lvPPA also developed emotion processing impairments, with disease progression. Both nfvPPA and lvPPA showed continuing cortical atrophy in hallmark language-processing regions associated with these syndromes, together with progressive involvement of the right hemisphere regions, mirroring left hemisphere atrophy patterns at presentation. Decline in emotion processing was associated with bilateral frontal atrophy in nfvPPA and right temporal atrophy in lvPPA. CONCLUSIONS: Our results show divergent clinical courses in nfvPPA and lvPPA, with rapid cognitive and neural deterioration in lvPPA and emotion processing decline in both groups and support the concurrent assessment of cognition and emotion processing in the clinic to inform diagnosis and monitoring in the non-semantic variants of PPA.

The Changing Roles of Urologists, Radiologists, and Advanced Practice Providers in Uroradiology Procedures.

INTRODUCTION: Urology has seen shifts in the management of many urologic conditions with the advent of noninvasive procedures that rely on multidisciplinary radiological modalities. This study seeks to analyze changes in urologists, radiologists, and advanced practice providers (APPs) performing uroradiology procedures over time. METHODS: The Centers for Medicare & Medicaid Services Physician/Procedure Summary data from 2010 to 2021 were utilized to examine uroradiology Current Procedural Terminology codes billed by urologists, radiologists, and APPs. Percent of total reimbursement and higher volume procedure count (after excluding providers with <11 procedures by per year) by each provider field was calculated and analyzed for changes in distribution from 2010 to 2021. RESULTS: There were significant changes in all procedures when examining procedure reimbursement distribution in 2010 to 2021 (P < .001). During the period, urology saw decreases in reimbursement proportion as large as 28.7% for kidney cryoablation and increases as large as 14.2% for nephrostomy tube removals. Radiology saw the largest decreases in reimbursement proportion with an 18.9% decrease for nephrostograms, while the largest increase was 23.6% for suprapubic tube placements. APPs saw the largest increase in suprapubic tube changes reimbursement proportion, which rose 14.2% from 2010 to 2021. There were significant changes in proportion in all procedures, except for antegrade stent, renal cryoablation, renal biopsy, and renal thermoablation. CONCLUSIONS: Uroradiology procedures have seen shifts in the distribution of which provider type performs each procedure. Most large changes in reimbursement and procedure proportion were shifted between urology and radiology, with APPs seeing smaller changes.

Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability.

Introduction: Self-determination is a fundamental human right positively related to quality of life. However, Autistic people are reported to be less self-determined than non-autistic people. We aimed to (1) understand what self-determination means to Autistic people from their perspective, (2) explore their perceptions of current barriers to being self-determined, and (3) learn from Autistic people about how they would like to be supported to be self-determined. Methods: Semi-structured interviews were done with 19 Autistic adults without co-occurring intellectual disability. Data were analyzed by three Autistic and two non-autistic researchers through an iterative process of data familiarization, coding, and theme development, informed by reflexive thematic analysis. Autistic Community Partners (ACP) were also engaged throughout the study, and provided substantive feedback on all methods and results. Results: Self-determination held the same meaning for Autistic people as non-autistic people. More specifically, participants discussed having the opportunity and support to make choices and decisions in life without unnecessary control from others. Experiences of self-determination were centered around: (1) lack of opportunity, influenced by ableist expectations and discrimination, and (2) executive processing differences that interfered with choice and decision-making. Desired areas of support related to providing opportunities to (1) make choices and exert autonomy, (2) be supported to unmask and be valued as one's authentic Autistic self, and (3) offering pragmatic support for executive processing differences. Conclusion: Autistic adults desire to be self-determined and can flourish with support, as they determine to be appropriate, which might look different from support commonly offered or sought by non-autistic people. Although individualized support was discussed, the ideal desired support was for an inclusive society that values and respects their neurodivergence, rather than imposing ableist expectations. An inclusive society is only achievable through reduced (or eliminated) stigma and prejudice against Autistic people.

Changes in Billing and Reimbursement for Urology Office Visits Before and After Medicare Payment Reforms.

INTRODUCTION: The impact of Medicare reimbursement changes on urology office visit reimbursements has not been fully examined. This study aims to analyze the impact of urology office visit Medicare reimbursements from 2010 to 2021, with a focus on 2021 Medicare payment reforms. METHODS: The Centers for Medicare and Medicaid Services Physician/Procedure Summary data from 2010-2021 were utilized to examine office visit CPT (Current Procedural Terminology) new patient visit codes 99201-99205 and established patient visit codes 99211-99215 by urologists. Mean office visit reimbursements (2021 USD), CPT specific reimbursements, and proportion of level of service were compared. RESULTS: The 2021 mean visit reimbursement was $110.95, up from $99.42 in 2020 and $94.44 in 2010 (both P < .001). From 2010 to 2020, all CPT codes, except for 99211, had a decrease in mean reimbursement. From 2020 to 2021, there was an increase in mean reimbursement for CPT codes 99205, 99212-99215 and decreases in 99202, 99204 and 99211 (P < .001). New and established patient urology office visits had significant migration of billing codes from 2010 to 2021 (P < .001). New patient visits were most commonly as 99204, which increased from 47% in 2010 to 65% in 2021 (P < .001). The most commonly billed established patient urology visit was 99213 until 2021 when 99214 became the most common at 46% (P < .001). CONCLUSIONS: Urologists have seen increases in mean reimbursements for office visits both before and after the 2021 Medicare payment reform. Contributing factors consist of increased established patient visit reimbursements despite decreased new patient visit reimbursements, and changes in level of CPT code billings.

Low flow nasal cannula requirement among preterm infants: predictors and description of clinical course.

OBJECTIVE: We aim to identify potential risk factors associated with longer duration of supplemental oxygen use in preterm infants at risk for bronchopulmonary dysplasia (BPD) to better inform families and weaning protocols. STUDY DESIGN: This is a retrospective study of infants with a birth gestational age (GA) < 32 0/7 weeks admitted to the neonatal intensive care unit (NICU) between October 2017 and September 2019. RESULTS: A total of 172 infants met criteria for inclusion and analysis, of which 69 (40.1%) infants required LFNC. Risk factors for longer duration included lower birth GA or birth weight, increased ventilator days, and diagnosis of a patent ductus arteriosus (PDA). BPD was diagnosed in 69.6% who required LFNC, of which 47.8% were discharged on home oxygen. CONCLUSION: Younger birth GA, lower birth weight, increased ventilator days, and presence of a PDA were identified as risk factors for longer LFNC duration.

Prediabetes: Adherence to Nutrition Visits Decreases HbA1c in Children and Adolescents.

Background: Prediabetes, the precursor of type 2 diabetes (T2D), is on the rise in the US, but the determinants of its progression are poorly characterized in youth. Objective: To determine the impact of nutrition visits, as a surrogate marker of lifestyle modification, on the trajectory of prediabetes over a 4-year period. Hypothesis: Adherence to nutrition visits could reduce BMI and lower HbA1c. Methods: A 4-year retrospective study of 108 youth with prediabetes who were recommended to receive medical nutrition therapy every 3 months following their diagnosis. Subjects were divided into 2 groups: the non-adherent group who had ≤1 nutrition visit/year, and the adherent group with ≥2 nutrition visits/year. Results: There were 46 male subjects, mean age 12.4 ± 3.6y; and 62 female subjects, mean age, 13.3 ± 3.0y, p=0.2. The adherent group (n=44, 41.5%) had higher BMI z-scores, but similar values for HbA1c, metformin use, and racial/ethnic composition compared to the non-adherent group. Overall, 18(17.0%) subjects progressed to T2D in 4y and consisted of 14(22.6%) of the 62 non-adherent subjects and 4(9.1%) of the 44 adherent subjects. The non-adherent subjects progressed to T2D at a mean duration of 25.8 ± 12.6 months while the adherent subjects progressed at a mean duration of 34.9 ± 11.8 months. The hazard ratio of progression from prediabetes to T2D for the non-adherent versus adherent group was 3.88 (95%CI 1.26-11.98, p=0.02). The results remained significant after adjusting for age, sex, race/ethnicity, BMI, and metformin use. Conclusion: Adherence to nutrition visits was associated with a 4-fold reduction in the likelihood to progress from prediabetes to T2D in US youth.

Problematic Behaviors and Predicting Online Risk Behaviors in High School Students.

Adolescent behavior now occurs offline and online. Frequently studied and treated independently, the relationship between offline problem behaviors and online risk taking is not well understood. This study asked whether there are any problematic behaviors predictive of online risk taking by high school students. Using a 2009 dataset of 2,077 high school students grades 9-12, five areas of offline problematic behaviors were examined: Academic problems, anxiety, behavioral wrongdoing, bullying, and social-emotional. Nine binary results were classified as online risk: Sexting, online harassment (perpetrating and experiencing), visiting sex sites, talking about sex, receiving sexual pictures, meeting offline, anything sexual happened, feeling nervous or uncomfortable. Behavioral wrongdoing (fighting, school suspension, trouble with police, theft), emerged as a significant predictor appearing in all nine models, followed by bullying experience (bully or victim) in six models. Identifying common problem behaviors that predict online risk taking are key components in developing strategies to promote adolescent health and well-being.

Impact of a targeted volume-increase nutrition guideline on growth and body mass index in premature infants: A retrospective review.

BACKGROUND: The negative impact of disproportionate growth in premature infants is well documented, but optimal nutrition practices needed to prevent an unhealthy body mass index (BMI) remain unclear. METHODS: An evidence-based, volume-increase guideline that advanced feeding volumes from 150-160 to 170-180 ml/kg/day between the postmenstrual age (PMA) of 31 0/7 and 34 0/7 weeks was implemented in October 2017 for infants born at ≤32 0/7 weeks' gestational age. Data were collected on 262 infants' weight and length at birth and at discharge for 20 months before and 21 months after guideline implementation, and retrospective analysis was conducted to determine disproportionate growth by comparing BMIs (in g/cm2 ) at birth and at discharge. Changes in infants' body habitus were determined through bivariate analysis of weight and length z-scores from the Fenton growth curve. RESULTS: Implementation of a targeted volume nutrition guideline resulted in fewer infants with growth failure, defined as weight <10th percentile (19.5% vs 11.2%; P = .06) at discharge. Infants who received treatment according to the targeted nutrition guideline had a statistically significant reduction in disproportionately low BMI (8.6% vs 2.5%; P = .0380) and an increase in disproportionately high BMIs (4.3% vs 12.3%; P = .025). There was minor change in the percentage of disproportionately large infants who received the guidelines from birth to discharge (11.5% vs 12.3%). CONCLUSIONS: A targeted volume-increase nutrition guideline may prevent growth failure, with some effects on disproportionate growth in preterm infants born at ≤32 0/7 weeks' gestational age.

Ergocalciferol in New-onset Type 1 Diabetes: A Randomized Controlled Trial.

CONTEXT: The effect of the anti-inflammatory and immunomodulatory actions of vitamin D on the duration of partial clinical remission (PR) in youth with type 1 diabetes (T1D) is unclear. OBJECTIVE: This work aimed to determine the effect of adjunctive ergocalciferol on residual ß-cell function (RBCF) and PR in youth with newly diagnosed T1D who were maintained on a standardized insulin treatment protocol. The hypothesis was that ergocalciferol supplementation increases RBCF and prolongs PR. METHODS: A 12-month, randomized, double-blind, placebo-controlled trial was conducted of 50 000 IU of ergocalciferol per week for 2 months, and then once every 2 weeks for 10 months, vs placebo in 36 individuals aged 10 to 21 years, with T1D of less than 3 months and a stimulated C-peptide (SCP) level greater than or equal to 0.2 nmol/L (≥ 0.6 ng/mL). The ergocalciferol group had 18 randomly assigned participants (10 male/8 female), mean age 13.3 ±â€…2.8 years, while the control group had 18 participants (14 male/4 female), aged 14.3 ±â€…2.9 years. RESULTS: The ergocalciferol treatment group had statistically significantly higher serum 25-hydroxyvitamin D at 6 months (P = .01) and 9 months (P = .02) than the placebo group. At 12 months, the ergocalciferol group had a statistically significantly lower serum tumor necrosis factor α (TNF-α) concentration (P = .03). There were no statistically significant differences between the groups at each time point from baseline to 12 months for SCP concentration (P = .08), glycated hemoglobin A1c (HbA1c) (P = .09), insulin dose-adjusted A1c (IDAA1c), or total daily dose of insulin. Temporal trends for rising HbA1c (P = .04) and IDAA1c (P = .02) were statistically significantly blunted in the ergocalciferol group. CONCLUSION: Ergocalciferol statistically significantly reduced serum TNF-α concentration and the rates of increase both in A1c and IDAA1c, suggesting a protection of RBCF and PR in youth with newly diagnosed T1D.

Does recorded oximetry utilizing a consensus-based algorithm compare to polysomnography in discontinuing home oxygen therapy in premature infants?

BACKGROUND: Approximately a third of all extremely preterm infants diagnosed with bronchopulmonary dysplasia will require home oxygen therapy (HOT). Lack of consensus-based guidelines has led to significant variability in outpatient HOT management in the United States. A common assessment performed before discontinuing oxygen is a formal polysomnogram (PSG). PSGs are potentially undesirable due to cost, lack of convenient access, and parental stress, so alternative testing to determine the optimal timing of safe oxygen discontinuation are needed. METHODS: We compared nocturnal recorded home oximetry (RHO) with PSG data in a cohort of patients from the RHO trial for patients who had recordings performed simultaneously to or within 24 h of their PSG. The RHO trial was a randomized, unblinded, multi-center trial comparing two oxygen management strategies. Parameters of oxygenation were compared between PSG and RHO, and nonoximegtry findings from the PSG that changed clinical management were identified. RESULTS: A total of 53 infants randomized to obtain a PSG as part of the RHO trial (55%) completed a PSG, and of those, 32 (64%) completed both a PSG with comparison RHO. There were more white infants in both groups than other races and ethnicities. Bland-Altman analysis showed a strong agreement of oxygen saturation time below 90% SpO2 between PSG and RHO results (slope = 1.014, p = 0.24). Results agreed in 96% of cases. CONCLUSION: RHO is a safe and effective alternative to PSG to assist in determination of discontinuing HOT in infants with BPD without other risks for sleep-disordered breathing.

Partial Clinical Remission Reduces Lipid-Based Cardiovascular Risk in Adult Patients With Type 1 Diabetes.

Importance: Risk factors for atherosclerotic cardiovascular disease (ASCVD) are well established in type 2 diabetes (T2D), but not in type 1 diabetes (T1D). The impact of partial clinical remission (PR) on short-term ASCVD risk in T1D is unclear. Aim: To investigate the impact of PR on the earliest ASCVD risk phenotype in adult T1D using factor analysis to compare the lipid phenotypes of T1D, T2D and controls after stratifying the T1D cohort into remitters and non-remitters. Subjects and Methods: A study of 203 adults subjects consisting of 86 T2D subjects, and 77 T1D subjects stratified into remitters (n=49), and non-remitters (n=28). PR was defined as insulin-dose adjusted HbA1c of ≤9, and obesity as a BMI ≥30 kg/m2. Factor analysis was used to stratify the groups by ASCVD risk by factorizing seven lipid parameters (TC, LDL, HDL, non-HDL, TC/HDL, TG, TG/HDL) into 2 orthogonal factors (factor 1: TC*LDL; factor 2: HDL*TG) that explained 90% of the variance in the original seven parameters. Results: The analysis of individual lipid parameters showed that TC/HDL was similar between the controls and remitters (p=NS) but was significantly higher in the non-remitters compared to the remitters (p=0.026). TG/HDL was equally similar between the controls and remitters (p=NS) but was lower in the remitters compared to the non-remitters (p=0.007). TG was significantly lower in the remitters compared to T2D subjects (p<0.0001) but was similar between T2D subjects and non-remitters (p=NS). Non-HDL was significantly lower in the controls versus non-remitters (p=0.0003) but was similar between the controls and remitters (p=NS). Factor analysis showed that the means of factor 1 and factor 2 composite scores for dyslipidemia increased linearly from the controls, remitters, non-remitters to T2D, p value 0.0042 for factor 1, and <0.0001 for factor 2, with remitters having similar lipid phenotype as controls, while non-remitters were similar to T2D. Conclusions: Partial clinical remission of T1D is associated with a favorable early lipid phenotype which could translate to reduced long-term CVD risk in adults.

Tracking Lower Urinary Tract Symptoms and Tamsulosin Side Effects Among Older Men Using a Mobile App (PERSONAL): Feasibility and Usability Study.

BACKGROUND: Continuous α1a-blockade is the first-line treatment for lower urinary tract symptoms (LUTS) among older men with suspected benign prostatic hyperplasia. Variable efficacy and safety for individual men necessitate a more personalized, data-driven approach to prescribing and deprescribing tamsulosin for LUTS in older men. OBJECTIVE: We aim to evaluate the feasibility and usability of the PERSONAL (Placebo-Controlled, Randomized, Patient-Selected Outcomes, N-of-1 Trials) mobile app for tracking daily LUTS severity and medication side effects among older men receiving chronic tamsulosin therapy. METHODS: We recruited patients from the University of California, San Francisco health care system to participate in a 2-week pilot study. The primary objectives were to assess recruitment feasibility, study completion rates, frequency of symptom tracking, duration of tracking sessions, and app usability rankings measured using a follow-up survey. As secondary outcomes, we evaluated whether daily symptom tracking led to changes in LUTS severity, perceptions of tamsulosin, overall quality of life, medication adherence between baseline and follow-up surveys, and perceived app utility. RESULTS: We enrolled 19 men within 23 days, and 100% (19/19) of the participants completed the study. Each participant selected a unique combination of symptoms to track and recorded data in the PERSONAL app, with a median daily completion rate of 79% (11/14 days). The median duration of the app session was 44 (IQR 33) seconds. On a scale of 1 (strongly disagree) to 5 (strongly agree), the participants reported that the PERSONAL app was easy to use (mean 4.3, SD 1.0), that others could learn to use it quickly (mean 4.2, SD 0.9), and that they felt confident using the app (mean 4.4, SD 0.8). LUTS severity, quality of life, and medication adherence remained unchanged after the 2-week study period. Fewer men were satisfied with tamsulosin after using the app (14/19, 74% vs 17/19, 89% at baseline), although the perceived benefit from tamsulosin remained unchanged (18/19, 95% at baseline and at follow-up). In total, 58% (11/19) of the participants agreed that the PERSONAL app could help people like them manage their urinary symptoms. CONCLUSIONS: This pilot study demonstrated the high feasibility and usability of the PERSONAL mobile app to track patient-selected urinary symptoms and medication side effects among older men taking tamsulosin to manage LUTS. We observed that daily symptom monitoring had no adverse effects on the secondary outcomes. This proof-of-concept study establishes a framework for future mobile app studies, such as digital n-of-1 trials, to collect comprehensive individual-level data for personalized LUTS management in older men.

Perceptions of Older Men Using a Mobile Health App to Monitor Lower Urinary Tract Symptoms and Tamsulosin Side Effects: Mixed Methods Study.

BACKGROUND: Mobile health (mHealth) apps may provide an efficient way for patients with lower urinary tract symptoms (LUTS) to log and communicate symptoms and medication side effects with their clinicians. OBJECTIVE: The aim of this study was to explore the perceptions of older men with LUTS after using an mHealth app to track their symptoms and tamsulosin side effects. METHODS: Structured phone interviews were conducted after a 2-week study piloting the daily use of a mobile app to track the severity of patient-selected LUTS and tamsulosin side effects. Quantitative and qualitative data were considered. RESULTS: All 19 (100%) pilot study participants completed the poststudy interviews. Most of the men (n=13, 68%) reported that the daily questionnaires were the right length, with 32% (n=6) reporting that the questionnaires were too short. Men with more severe symptoms were less likely to report changes in perception of health or changes in self-management; 47% (n=9) of the men reported improved awareness of symptoms and 5% (n=1) adjusted fluid intake based on the questionnaire. All of the men were willing to share app data with their clinicians. Thematic analysis of qualitative data yielded eight themes: (1) orientation (setting up app, format, symptom selection, and side-effect selection), (2) triggers (routine or habit and symptom timing), (3) daily questionnaire (reporting symptoms, reporting side effects, and tailoring), (4) technology literacy, (5) perceptions (awareness, causation or relevance, data quality, convenience, usefulness, and other apps), (6) self-management, (7) clinician engagement (communication and efficiency), and (8) improvement (reference materials, flexibility, language, management recommendations, and optimize clinician engagement). CONCLUSIONS: We assessed the perceptions of men using an mHealth app to monitor and improve management of LUTS and medication side effects. LUTS management may be further optimized by tailoring the mobile app experience to meet patients' individual needs, such as tracking a greater number of symptoms and integrating the app with clinicians' visits. mHealth apps are likely a scalable modality to monitor symptoms and improve care of older men with LUTS. Further study is required to determine the best ways to tailor the mobile app and to communicate data to clinicians or incorporate data into the electronical medical record meaningfully.

Variation in Pediatric Anesthesiologist Sedation Practices for Pediatric Gastrointestinal Endoscopy.

Background: Despite a worldwide shift toward anesthesiologist-administered sedation for gastrointestinal endoscopy in children, ideal sedation regimens remain unclear and best practices undefined. Aim: The aim of our study was to document variation in anesthesiologist-administered sedation for pediatric endoscopy. Outcomes of interest included coefficients of variation, procedural efficiency, as well as adverse events. Methods: IRB approval was obtained to review electronic health records of children undergoing routine endoscopy at our medical center during a recent calendar year. Descriptive and multivariate analyses were used to examine predictors of sedation practices. Results: 258 healthy children [2-21 years (median 15, (Q1-Q3 = 10-17)] underwent either upper and/or lower endoscopies with sedation administered by anesthesiologists (n = 21), using different sedation regimens (29) that ranged from a single drug administered to 6 sedatives in combination. Most patients did not undergo endotracheal tube intubation for the procedure (208, 81%), and received propofol (255, 89%) either alone or in combination with other sedatives. A total of 10 (3.8%) adverse events (9 sedation related) were documented to occur. The coefficient of variation (CV) for sedation times was high at 64.2%, with regression analysis suggesting 8% was unexplained by procedure time. Multivariable model suggested that longer procedure time (p < 0.0001), younger age (p < 0.0001), and use of endotracheal tube intubation (p = 0.02) were associated with longer sedation time. Discussion: We found great variation in anesthesiologist administered regimens for pediatric endoscopy at our institution that may be unwarranted, presenting may opportunities for minimizing patient risk, as well as for optimizing procedural efficiency.

Access to care solutions in healthcare for obstetric care in Africa: A systematic review.

BACKGROUND: Emergency Medical Services (EMS) systems exist to reduce death and disability from life-threatening medical emergencies. Less than 9% of the African population is serviced by an emergency medical services transportation system, and nearly two-thirds of African countries do not have any known EMS system in place. One of the leading reasons for EMS utilization in Africa is for obstetric emergencies. The purpose of this systematic review is to provide a qualitative description and summation of previously described interventions to improve access to care for patients with maternal obstetric emergencies in Africa with the intent of identifying interventions that can innovatively be translated to a broader emergency context. METHODS: The protocol was registered in the PROSPERO database (International Prospective Register of Systematic Reviews) under the number CRD42018105371. We searched the following electronic databases for all abstracts up to 10/19/2020 in accordance to PRISMA guidelines: PubMed/MEDLINE, Embase, CINAHL, Scopus and African Index Medicus. Articles were included if they were focused on a specific mode of transportation or an access-to-care solution for hospital or outpatient clinic care in Africa for maternal or traumatic emergency conditions. Exclusion criteria included in-hospital solutions intended to address a lack of access. Reference and citation analyses were performed, and a data quality assessment was conducted. Data analysis was performed using a qualitative metasynthesis approach. FINDINGS: A total of 6,457 references were imported for screening and 1,757 duplicates were removed. Of the 4,700 studies that were screened against title and abstract, 4,485 studies were excluded. Finally, 215 studies were assessed for full-text eligibility and 152 studies were excluded. A final count of 63 studies were included in the systematic review. In the 63 studies that were included, there was representation from 20 countries in Africa. The three most common interventions included specific transportation solutions (n = 39), community engagement (n = 28) and education or training initiatives (n = 27). Over half of the studies included more than one category of intervention. INTERPRETATION: Emergency care systems across Africa are understudied and interventions to improve access to care for obstetric emergencies provides important insight into existing solutions for other types of emergency conditions. Physical access to means of transportation, efforts to increase layperson knowledge and recognition of emergent conditions, and community engagement hold the most promise for future efforts at improving emergency access to care.

Characterizing online crowdfunding campaigns for patients with kidney cancer.

BACKGROUND: Cancer patients incur high care costs; however, there is a paucity of literature characterizing unmet financial obligations for patients with urologic cancers. Kidney cancer patients are particularly burdened by costs associated with novel systemic treatments. This study aimed to ascertain the characteristics of GoFundMe® crowdfunding campaigns for patients with kidney cancer, in order to better understand the financial needs of this population. METHODS: We performed a cross-sectional, quantitative, and qualitative analysis of all kidney cancer GoFundMe® campaigns since 2010. Fundraising metrics such as goal funds and amount raised, were extracted. Eight independent investigators collected patient, disease and campaign-level variables from campaign stories (κ = 0.72). In addition, we performed a content analysis of campaign narratives spotlighting the primary appeal of the patient's life story. RESULTS: A total of 486 GoFundMe® kidney cancer campaigns were reviewed. The median goal funds were 10,000USD [IQR = 5000, 20,000] and the median amount raised was 1450USD [IQR = 578, 4050]. Most campaigns were for adult males (53%) and 62% of adults had children. A minority were for pediatric patients (17%). Thirty-seven percent of adult patients were primary wage earners and 43% reported losing their job or substantially reducing hours due to illness. Twenty-nine percent reported no insurance or insufficient coverage. Campaigns most frequently sought funds for medical bills (60%), nonmedical bills (27%), and medical travel (23%). Qualitative campaign narratives mostly emphasized patients' hardship (46.3%) or high moral character (35.2%). Only 8% of campaigns achieved their target funds. CONCLUSIONS: Despite fundraising efforts, patients with kidney cancer face persistent financial barriers, incurring both medical and nonmedical cost burdens. This may be compounded by limited or no insurance. Cancer care providers should be aware of financial constraints placed on kidney cancer patients, and consider how these may impact treatment regimens.

Long-term GH Therapy Does Not Advance Skeletal Maturation in Children and Adolescents.

CONTEXT: There is no consensus on the effect of recombinant human GH (rhGH) therapy on skeletal maturation in children despite the current practice of annual monitoring of skeletal maturation with bone age in children on rhGH therapy. AIMS: To investigate the effects of long-term rhGH therapy on skeletal age in children and explore the accuracy of bone age-predicted adult height (BAPAH) at different ages based on 13 years of longitudinal data. METHODS: A retrospective longitudinal study of 71 subjects aged 2 to 16 years, mean 9.9 ±â€…3.8 years, treated with rhGH for nonsyndromic short stature for a duration of 2 to 14 years, mean, 5.5 ±â€…2.6 years. Subjects with syndromic short stature and systemic illnesses such as renal failure were excluded. RESULTS: Bone age minus chronological age (BA-CA) did not differ significantly between baseline and the end of rhGH therapy (-1.05 ±â€…1.42 vs -0.69 ±â€…1.63, P = 0.09). Piecewise regression, however, showed a quantifiable catch-up phenomenon in BA of 1.5 months per year of rhGH therapy in the first 6.5 years (P = 0.017) that plateaued thereafter (P = 0.88). BAPAH overestimated near-adult height in younger subjects but became more accurate in older subjects (P < 0.0001). IGF-I levels correlated significantly with increases in child's height and BA-CA. CONCLUSION: Long-term rhGH therapy demonstrated an initial catch-up phenomenon in skeletal maturation in the first 6.5 years that plateaued thereafter with no overall significant advancement in bone age. These findings are reassuring and support strategic, but not the insurance company mandated reflexive annual monitoring of skeletal maturation with bone age in children receiving rhGH therapy.