scholarly journals Impact of the Coronavirus Pandemic on High-Risk Infant Follow-Up (HRIF) Programs: A Survey of Academic Programs

Children ◽  
2021 ◽  
Vol 8 (10) ◽  
pp. 889
Author(s):  
Sanjeet Panda ◽  
Rashmi Somu ◽  
Nathalie Maitre ◽  
Garrett Levin ◽  
Ajay Pratap Singh
Keyword(s):  
High Risk ◽  
North America ◽  
Study Design ◽  
Questionnaire Survey ◽  
Government Funding ◽  
Academic Programs ◽  
High Risk Infant ◽  
The Us ◽  
The Impact

Objective: The impact of the COVID-19 pandemic on the functioning and services of academic high-risk infant follow-up (HRIF) clinics throughout North America. Study Design: Prospective 25-question questionnaire survey through REDCAP links that was sent over 10 weeks, to 105 US and 10 Canadian programs. Finally, 59 of 105 US programs and 5 of 10 Canadian responses were analyzed using SAS version 9.4. Results: In the US, 67% of programs reported closures between 1–5 months, whereas in Canada 80% of programs closed for 1–3 months. In the US 86% of programs provided telemedicine visits and only 42.5% provided multidisciplinary HRIF telemedicine visits. We enumerated innovative approaches specifically for the conduct of Telemedicine visits, the need for the standardization of various tests and services in a telemedicine setting, and to emphasize the urgent need for more government funding to improve follow-up and developmental services to this fragile group of newborns.

Rural Residence and Factors Associated with Attendance at the Second High-Risk Infant Follow-up Clinic Visit for Very Low Birth Weight Infants in California

2021 ◽  
Author(s):  
Martha G. Fuller ◽  
Tianyao Lu ◽  
Erika E. Gray ◽  
Maria A. L. Jocson ◽  
Mary K. Barger ◽  
...  
Keyword(s):  
Birth Weight ◽  
High Risk ◽  
Low Birth Weight ◽  
Very Low Birth Weight ◽  
Rural Residence ◽  
High Risk Infant ◽  
Vlbw Infants ◽  
Factors Associated ◽  
The Impact

Objective This study was aimed to determine factors associated with attendance at the second high-risk infant follow-up (HRIF) visit (V2) by 20 months of corrected age after a successful first visit (V1), and the impact of rural residence on attendance rates in a statewide population of very low birth weight (VLBW; <1,500 g) infants. Study Design Data linked from the California Perinatal Quality of Care Collaborative (CPQCC) Neonatal Intensive Care Unit (NICU) database and CPQCC-California Children's Services (CCS) HRIF database. Multivariable logistic regression evaluated independent associations of sociodemographic, maternal, family, neonatal clinical, and individual HRIF program differences (factors) with successful V2 in VLBW infants born in 2010 to 2012. Results Of 7,295 eligible VLBW infants, 75% (5,475) attended V2. Sociodemographic factors independently associated with nonattendance included maternal race of Black (adjusted odds ratio [aOR] = 0.61; 95% confidence interval [CI]: 0.5–0.75), public insurance (aOR = 0.79; 95% CI: 0.69–0.91), and rural residence (aOR = 0.74; 95% CI: 0.61–0.9). Factors identified at V1that were associated with V2 attendance included attending V1 within the recommended window (aOR = 2.34; 95% CI: 1.99–2.75) and early intervention enrollment (aOR = 1.39; 95% CI: 1.12–1.61). Neonatal factors associated with attendance included birth weight ≤750 g (aOR = 1.83; 95% CI: 1.48–2.5). There were significant program differences with risk-adjusted rates ranging from 43.7 to 99.7%. Conclusion Sociodemographic disparities and HRIF program factors are associated with decreased attendance at V2 among VLBW infants. These findings highlight opportunities for quality and process improvement interventions starting in the NICU and continuing through transition to home and community to assure participation in HRIF. Key Points

Programmatic and Administrative Barriers to High-Risk Infant Follow-Up Care

2018 ◽  
Vol 35 (10) ◽  
pp. 940-945 ◽  
Author(s):  
Henry Lee ◽  
Erika Gray ◽  
Jeffrey Gould ◽  
Susan Hintz ◽  
Brian Tang
Keyword(s):  
High Risk ◽  
Study Design ◽  
Population Based ◽  
High Risk Infant ◽  
Web Based ◽  
Effective Strategies ◽  
Phone Calls ◽  
Follow Up Care ◽  
Survey Responses

Objective This article characterizes programmatic features of a population-based network of high-risk infant follow-up programs and identifies potential challenges associated with attendance from the providers' perspective. Study Design A web-based survey of high-risk infant follow-up program directors, coordinators, and providers of a statewide high-risk infant follow-up system. Frequencies and percentages were used to describe the survey responses. Results Of the 68 high-risk infant follow-up programs in California, 56 (82%) responded to the survey. The first visit no-show rate between 10 and 30% was estimated by 44% of programs with higher no-show rates for subsequent visits. Common strategies to remind families of appointments were phone calls and mailings. Most programs (54%) did not have a strategy to help families who lived distant to the high-risk infant follow-up clinic. Conclusion High-risk infant follow-up programs may lack resources and effective strategies to enhance follow-up, particularly for those living at a distance.

Favorable Outcome for Infant ALL Following Hematopoietic Stem Cell Transplantation (HSCT).

Blood ◽  
2004 ◽  
Vol 104 (11) ◽  
pp. 2155-2155 ◽  
Author(s):  
David A. Jacobsohn ◽  
Brad Hewlett ◽  
Elaine Morgan ◽  
Reggie E. Duerst ◽  
Morris Kletzel
Keyword(s):  
Stem Cell ◽  
High Risk ◽  
Chronic Gvhd ◽  
Intensive Therapy ◽  
Intrathecal Methotrexate ◽  
High Risk Infant ◽  
Hematopoietic Stem ◽  
The Impact ◽  
Very High

Abstract There exists controversy regarding the benefit of HSCT in infant ALL. At our institution, the standard treatment for high-risk infant ALL has been intensive chemotherapy per POG 9407 followed by HSCT in CR1. We retrospectively reviewed the outcome of the 15 patients (9 males, 6 females) with infant ALL that underwent allogeneic HSCT since 1992. We defined “very high-risk” as an infant with one or more of the following criteria: age 6 months or less at diagnosis, MLL+ or t(4:11), or WBC>100,000 at diagnosis. Fourteen of fifteen patients are considered “very high-risk.” All except one were under 12 months at diagnosis (range 2–14 months, median 7). The fourteen month old was included as she displayed infant ALL biology, with MLL+ and WBC>500,000. Seven were 6 months or under at diagnosis. Cytogenetics at diagnosis showed MLL+ or t(4:11) in 9, normal in 4, and indeterminate in 2 patients. WBC count at diagnosis was 4,300–1,000,000 (median 360,000). Twelve of the patients were CALLA-negative and four had CNS involvement at diagnosis. Time from diagnosis to transplant was 2.3–13.6 months (median 4.2). All patients were in morphologic CR1 at time of HSCT but one patient had persistent t(4:11). Cytoreduction: Patients received TBI 150cGy x 8 (d-10 to-7); VP-16 1g/m2 CI (d-5 to-4); cyclophosphamide 60 mg/kg/day x 3(d-4 to-2). GVHD prophylaxis: CSA, short-course MTX, and ATG d +1, +3, +5, +7 (for unrelated cord blood (UCB)). Grafts were not T-cell depleted. Stem cell sources: 8 UCB, 6 HLA-identical sibling bone marrow, 1 HLA-identical sibling PBSC. Days to neutrophil engraftment was 11–25 days (median 16) and to platelet engraftment was 17–82 days (median 37). CNS prophylaxis consisted of intrathecal methotrexate and Ara-C monthly x 6 post-HSCT. Acute GVHD: 2 grade II and 1 grade III. Chronic GVHD: 3 limited, 1 extensive. Mortality: 4 patients have died. 2 (13%) of transplant-related mortality (TRM) within 100 days of HSCT and 2 of relapse (15% of evaluable patients), which included the patient with t(4:11) at time of HSCT. Range of follow-up is 0.1–11.8 years with a 73% event-free survival (EFS) and overall-survival at a median follow-up of 3.5 years. We conclude that patients with infant ALL who attain a CR1 (morphologic and cytogenetic) have good EFS with acceptable TRM following HSCT using either UCB or HSC from a matched-sibling. Long-term follow-up, including developmental assessments, are being pursued to document the impact of this intensive therapy in young children. Figure Figure

scholarly journals Sprawy polskie w Kanadzie w czasie I wojny światoweJ

2020 ◽  
Vol 46 (2 (176)) ◽  
pp. 227-245
Author(s):  
Anna Reczyńska
Keyword(s):  
North America ◽  
World War I ◽  
Ethnic Group ◽  
Lake Ontario ◽  
World War ◽  
Training Camp ◽  
The Us ◽  
The Impact

Polish Issues in Canada During World War I The article presents the impact of World War I on Polish immigrants in Canada, the position of the Polish ethnic group in this country and the efforts of persons of Polish descent in regard to recruitment for the Polish Army in North America. Poles, who were subjects of Germany or the Austro-Hungarian Empire were treated as enemy aliens. Those people were forced to register and report to the police on a regular basis and some of them were interned in labour camps during the war. Some were released from the camps after an intervention of Polish organizations and priests. Soldiers of Polish descent, volunteers and recruits also fought in the Canadian Expeditionary Forces in Europe. Over 20,000 Polish volunteers from the US (including over 200 from Canada) enrolled in a training camp formed in Niagara-on-the-Lake, Ontario on the border with the US. The problems with the organization and functioning of the camp, and opinions on Polish volunteers shaped the attitude of many Canadians towards the Polish diaspora and the newly established Polish state. Keywords: World War I, Polish Diaspora in Canada, Niagara-on-the-Lake camp, Haller’s Army, Colonel Arthur D’Orr LePan Streszczenie Artykuł przedstawia kilka przykładów obrazujących oddziaływanie wydarzeń I wojny światowej na żyjących w Kanadzie polskich imigrantów, pozycję polskiej grupy etnicznej w tym kraju oraz na aktywność osób polskiego pochodzenia na rzecz rekrutacji do wojska polskiego w Ameryce Północnej. Polaków, którzy byli poddanymi Niemiec lub monarchii austro-wegierskiej traktowano jak przedstawicieli państw wrogich. Mieli obowiązek rejestracji i regularnego zgłaszania się na policję a niektórzy zostali internowani w stworzonych w czasie wojny obozach pracy. Część z nich była z tych obozów zwolniona po interwencji polskich organizacji i polskich duchownych. Żołnierze polskiego pochodzenia, zarówno ochotnicy jak i poborowi, znaleźli się także w oddziałach Kanadyjskich Sił Ekspedycyjnych walczących w Europie. Ponad 20 tys. polskich ochotników z USA (w tym ponad 200 z Kanady) zgłosiło się też do obozu szkoleniowego utworzonego w Niagara-on-the-Lake, Ontario, przy granicy z USA. Problemy z organizacją i funkcjonowaniem tego obozu oraz opinie o polskich ochotnikach, kształtowały nastawienie wielu Kanadyjczyków do polskiej grupy etnicznej i nowotworzonego Państwa Polskiego.

scholarly journals P–759 The impact of the COVID–19 pandemic on women seeking fertility treatment in Germany: the patient´s perspective

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
S Wedner-Ross ◽  
F Vo. Versen-Höynck
Keyword(s):  
Study Design ◽  
Online Survey ◽  
Fertility Treatment ◽  
Unborn Child ◽  
Negative Effects ◽  
Cross Sectional ◽  
Professional Societies ◽  
Fertility Treatments ◽  
The Impact

Abstract Study question This cross-sectional survey sought the views of women seeking fertility treatment on the impact of the COVID–19 pandemic on their fertility treatment and attitudes. Summary answer Most respondents worried the recommendations to postpone treatment would reduce their chances of pregnancy and were concerned about negative effects of SARS-Cov–2 infections on pregnancy. What is known already In spring 2020, the recommendations of ESHRE and German professional societies to postpone fertility treatments resulted in limited or closed services from mid-March to early May in many clinics. Previous studies reported that postponing fertility clinic appointments causes psychological distress, with most patients saying they would have preferred to continue treatment. While no similar studies are available from Germany, where COVID–19 incidence was relatively low, concerns of the patients about possible consequences of a treatment delay and a SARS-CoV–2 infection on fertility and pregnancy remain unknown. Study design, size, duration This cross-sectional, anonymous, online questionnaire was completed in June-December 2020 by 249 women attending fertility clinics across Germany. The women were recruited using leaflets, directly by study personnel either in person or by telephone, or via online support group forums for fertility patients. Participants/materials, setting, methods All women seeking treatment in fertility clinics were eligible to participate. The online survey covered questions about the patient’s quality of life, their opinions about the professional societies’ recommendations and their effects as well as any concerns about infection with SARS-CoV–2. Statistical analysis was conducted using SPSS Version 27. Main results and the role of chance Three-quarters of participants disagreed with the pausing of fertility treatments. Women who participated from October-December 2020, when the incidence rate was high, were as likely to disagree as participants that participated from June-September 2020 (73% vs 79%, p = 0.3). Nearly all participants (95%) were concerned that treatment delays would reduce their chances of pregnancy. 72 participants (29%) had their appointments cancelled. Nearly all (97%) reported being upset by this, with 40 (56%) reporting that they were extremely or very disappointed about the cancellation. Women coming for follow-up appointments and women who had to wait 10 weeks or longer were more likely to be upset by the postponement or cancellation of their appointment (p = 0.016 and p = 0.012, respectively). Nearly all (97%) of the participants were worried about possible negative effects a SARS-CoV–2 infection might have related to their fertility, pregnancy or unborn child. Sixty-one percent stated they were very or moderately concerned about the negative influence the infection might have on the womańs own health during pregnancy and 60% were very to moderately concerned about potential negative effects for the unborn child. However, only 26% reported they were very or moderately concerned about the potential negative effects of an infection on fertility. Limitations, reasons for caution The main limitations of this study are the possibility of selection bias as people with strong opinions are more likely to have participated and the lack of information on non-responders due to the study design. Also, the Covid–19 pandemic is evolving continuously meaning that participantś opinions may vary over time. Wider implications of the findings: Postponement of treatments increased distress among patients and should be avoided when possible. If unavoidable, follow-up patients should be prioritised for treatment and the length of postponement should be minimised. Fertility clinics must provide information about the current state of knowledge of SARS-Cov–2 infections in pregnancies and options for immunization. Trial registration number Not applicable

scholarly journals National Academy of Clinical Biochemistry Laboratory Medicine Practice Guidelines: Follow-Up Testing for Metabolic Disease Identified by Expanded Newborn Screening Using Tandem Mass Spectrometry; Executive Summary

2009 ◽  
Vol 55 (9) ◽  
pp. 1615-1626 ◽  
Author(s):  
Dennis J Dietzen ◽  
Piero Rinaldo ◽  
Ronald J Whitley ◽  
William J Rhead ◽  
W Harry Hannon ◽  
...  
Keyword(s):  
Mass Spectrometry ◽  
Amino Acids ◽  
Tandem Mass Spectrometry ◽  
Organic Acids ◽  
Newborn Screening ◽  
Tandem Mass ◽  
Confirmatory Testing ◽  
The Us ◽  
The Impact

Abstract Background: Almost all newborns in the US are screened at birth for multiple inborn errors of metabolism using tandem mass spectrometry. Screening tests are designed to be sufficiently sensitive so that cases are not missed. The NACB recognized a need for standard guidelines for laboratory confirmation of a positive newborn screen such that all babies would benefit from equal and optimal follow-up by confirmatory testing. Methods: A committee was formed to review available data pertaining to confirmatory testing. The committee evaluated previously published guidelines, published methodological and clinical studies, clinical case reports, and expert opinion to support optimal confirmatory testing. Grading was based on guidelines adopted from criteria derived from the US Preventive Services Task Force and on the strength of recommendations and the quality of the evidence. Three primary methods of analyte measurement were evaluated for confirmatory testing including measurement of amino acids, organic acids, and carnitine esters. The committee graded the evidence for diagnostic utility of each test for the screened conditions. Results: Ample data and experience were available to make strong recommendations for the practice of analyzing amino acids, organic acids, and acylcarnitines. Likewise, strong recommendations were made for the follow-up test menu for many disorders, particularly those with highest prevalence. Fewer data exist to determine the impact of newborn screening on patient outcomes in all but a few disorders. The guidelines also provide an assessment of developing technology that will fuel a refinement of current practice and ultimate expansion of the diseases detectable by tandem mass spectrometry. Conclusions: Guidelines are provided for optimal follow-up testing for positive newborn screens using tandem mass spectrometry. The committee regards these tests as reliable and currently optimal for follow-up testing. .

scholarly journals Community-based aftercare following an emergency department presentation for attempted suicide or high risk for suicide: study protocol for a non-randomised controlled trial

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Vida V. Bliokas ◽  
Alex R. Hains ◽  
Jonathan A. Allan ◽  
Luise Lago ◽  
Rebecca Sng
Keyword(s):  
Emergency Department ◽  
High Risk ◽  
Suicide Attempt ◽  
Repeated Measures ◽  
Hospital Emergency Department ◽  
Hospital Emergency ◽  
Community Based ◽  
Treatment As Usual ◽  
The Impact

Abstract Background Suicide is a major public health issue worldwide. Those who have made a recent suicide attempt are at high risk for dying by suicide in the future, particularly during the period immediately following departure from a hospital emergency department. As such the transition from hospital-based care to the community is an important area of focus in the attempt to reduce suicide rates. There is a need for evaluation studies to test the effectiveness of interventions directed to this stage (termed ‘aftercare’ interventions). Methods A controlled non-randomised two group (intervention vs treatment-as-usual control) design, using an intention-to-treat model, will evaluate the effectiveness of a suicide prevention aftercare intervention providing follow-up after presentations to a hospital emergency department as a result of a suicide attempt or high risk for suicide. The intervention is a community-based service, utilising two meetings with a mental health clinician and follow-up contacts by peer workers via a combination of face-to-face and telephone for four weeks, with the option of extension to 12 weeks. Seventy-five participants of the intervention service will be recruited to the study and compared to 1265 treatment-as-usual controls. The primary hypotheses are that over 12 months, those who participate in the aftercare follow-up intervention are less likely than controls to present to a hospital emergency department for a repeat suicide attempt or because of high risk for suicide, will have fewer re-presentations during this period and will have lower all-cause mortality. As a secondary aim, the impact of the intervention on suicide risk factors for those who participate in the service will be evaluated using pre- and post-intervention repeated measures of depression, anxiety, stress, hopelessness, belongingness, burdensomeness, and psychological distress. Enrolments into the study commenced on 1 November 2017 and are anticipated to cease in November 2019. Discussion The study aims to contribute to the understanding of effective interventions for individuals who have presented to a hospital emergency department as a result of a suicide attempt or at high risk for suicide and provide evidence in relation to interventions that incorporate peer-workers. Trial registration ACTRN12618001701213. Registered on 16 October 2018. Retrospectively registered.

Second Primary Melanoma: Risk Factors, Histopathologic Features, Survival, and Implications for Follow-Up

2016 ◽  
Vol 82 (10) ◽  
pp. 1009-1013 ◽  
Author(s):  
Maris S. Jones ◽  
Hitoe Torisu-Itakura ◽  
Devin C. Flaherty ◽  
Hans F. Schoellhammer ◽  
Jihey Lee ◽  
...  
Keyword(s):  
Risk Factors ◽  
High Risk ◽  
Cutaneous Melanoma ◽  
Primary Melanoma ◽  
Second Primary ◽  
Melanoma Risk ◽  
Impact On Survival ◽  
The Impact ◽  
Histopathologic Features

The impact on survival of a second primary melanoma (SPM) is unclear. We used our melanoma center's database to examine clinicopathologic risk factors and outcomes of stage 0 to IV cutaneous melanoma in patients with one versus two primaries. Among 12,325 patients with primary melanoma, 969 (7.86%) developed SPM. SPMs were significantly thinner than autologous primary melanomas ( P = 0.01), and 451 SPM patients had better overall and melanoma-specific survival than 451 prognostically matched non-SPM patients ( P < 0.0001 and 0.0001, respectively) at a median follow-up of 142.37 months. Patients with cutaneous melanoma are at high risk for development of SPM, but the development of SPM does not seem to impair survival.

scholarly journals Longer Follow-Up Confirms Recurrence-Free Survival Benefit of Adjuvant Pembrolizumab in High-Risk Stage III Melanoma: Updated Results From the EORTC 1325-MG/KEYNOTE-054 Trial

2020 ◽  
Vol 38 (33) ◽  
pp. 3925-3936 ◽  
Author(s):  
Alexander M. M. Eggermont ◽  
Christian U. Blank ◽  
Mario Mandala ◽  
Georgina V. Long ◽  
Victoria G. Atkinson ◽  
...  
Keyword(s):  
Lymph Node ◽  
High Risk ◽  
Phase Iii ◽  
Stage Iii ◽  
Recurrence Free Survival ◽  
Meaningful Improvement ◽  
Free Survival ◽  
Stage Iii Melanoma ◽  
The Impact

PURPOSE We conducted the phase III double-blind European Organisation for Research and Treatment of Cancer (EORTC) 1325/KEYNOTE-054 trial to evaluate pembrolizumab versus placebo in patients with resected high-risk stage III melanoma. On the basis of 351 recurrence-free survival (RFS) events at a 1.25-year median follow-up, pembrolizumab prolonged RFS (hazard ratio [HR], 0.57; P < .0001) compared with placebo. This led to the approval of pembrolizumab adjuvant treatment by the European Medicines Agency and US Food and Drug Administration. Here, we report an updated RFS analysis at the 3.05-year median follow-up. PATIENTS AND METHODS A total of 1,019 patients with complete lymph node dissection of American Joint Committee on Cancer Staging Manual (seventh edition; AJCC-7), stage IIIA (at least one lymph node metastasis > 1 mm), IIIB, or IIIC (without in-transit metastasis) cutaneous melanoma were randomly assigned to receive pembrolizumab at a flat dose of 200 mg (n = 514) or placebo (n = 505) every 3 weeks for 1 year or until disease recurrence or unacceptable toxicity. The two coprimary end points were RFS in the overall population and in those with programmed death-ligand 1 (PD-L1)–positive tumors. RESULTS Pembrolizumab (190 RFS events) compared with placebo (283 RFS events) resulted in prolonged RFS in the overall population (3-year RFS rate, 63.7% v 44.1% for pembrolizumab v placebo, respectively; HR, 0.56; 95% CI, 0.47 to 0.68) and in the PD-L1–positive tumor subgroup (HR, 0.57; 99% CI, 0.43 to 0.74). The impact of pembrolizumab on RFS was similar in subgroups, in particular according to AJCC-7 and AJCC-8 staging, and BRAF mutation status (HR, 0.51 [99% CI, 0.36 to 0.73] v 0.66 [99% CI, 0.46 to 0.95] for V600E/K v wild type). CONCLUSION In resected high-risk stage III melanoma, pembrolizumab adjuvant therapy provided a sustained and clinically meaningful improvement in RFS at 3-year median follow-up. This improvement was consistent across subgroups.

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