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Families Experiences With Family Navigation Services in the Autism Treatment Network

BACKGROUND AND OBJECTIVES:

Families of children with autism spectrum disorder (ASD) often experience challenges navigating multiple systems to access services. Family navigation (FN) is a model to provide information and support to access appropriate services. Few studies have been used to examine FN’s effectiveness for families of children with ASD. This study used mixed methods to (1) characterize FN services received by a sample of families in the Autism Treatment Network; (2) examine change in parent-reported activation, family functioning, and caregiver strain; and (3) explore families’ experiences with FN services.

METHODS:

Family characteristics and parent outcomes including parent activation, family functioning, and caregiver strain were collected from 260 parents in the Autism Treatment Network. Descriptive statistics and linear mixed models were used for aims 1 and 2. A subsample of 27 families were interviewed about their experiences with FN services to address aim 3.

RESULTS:

Quantitative results for aims 1 and 2 revealed variability in FN services and improvement in parent activation and caregiver strain. Qualitative results revealed variability in family experiences on the basis of FN implementation differences (ie, how families were introduced to FN, service type, intensity, and timing) and whether they perceived improved skills and access to resources.

CONCLUSIONS:

Findings suggest FN adaptations occur across different health care delivery systems and may result in highly variable initial outcomes and family experiences. Timing of FN services and case management receipt may contribute to this variability for families of children with ASD.




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Family Engagement in the Autism Treatment and Learning Health Networks

Family involvement in the Autism Intervention Research Network on Physical Health, the Autism Treatment Network, and the Autism Learning Health Network, jointly the Autism Networks, has evolved and grown into a meaningful and robust collaboration between families, providers, and researchers. Family involvement at the center of the networks includes both local and national network-wide coproduction and contribution. Family involvement includes actively co-authoring research proposals for large grants, equal membership of network committees and workgroups, and formulating quality improvement pathways for local recruitment efforts and other network initiatives. Although families are involved in every aspect of network activity, families have been the driving force of specifically challenging the networks to concentrate research, education, and dissemination efforts around 3 pillar initiatives of addressing comorbidities of anxiety, attention-deficit/hyperactivity disorder, and irritability in autism during the networks’ upcoming funding cycle. The expansion of the networks’ Extension for Community Healthcare Outcomes program is an exciting network initiative that brings best practices in autism care to community providers. As equal hub members of each Extension for Community Healthcare Outcomes team, families ensure that participants are intimately cognizant of family perspectives and goals. Self-advocacy involvement in the networks is emerging, with plans for each site to have self-advocacy representation by the spring of 2020 and ultimately forming their own coproduction committee. The Autism Treatment Network, the Autism Intervention Research Network on Physical Health, and the Autism Learning Health Network continue to be trailblazing organizations in how families are involved in the growth of their networks, production of meaningful research, and dissemination of information to providers and families regarding emerging work in autism spectrum disorders.




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Improving Behavior Challenges and Quality of Life in the Autism Learning Health Network

OBJECTIVES:

To summarize baseline data and lessons learned from the Autism Learning Health Network, designed to improve care and outcomes for children with autism spectrum disorder (ASD). We describe challenging behaviors, co-occurring medical conditions, quality of life (QoL), receipt of recommended health services, and next steps.

METHODS:

A cross-sectional study of children 3 to 12 years old with ASD receiving care at 13 sites. Parent-reported characteristics of children with ASD were collected as outcome measures aligned with our network’s aims of reducing rates of challenging behaviors, improving QoL, and ensuring receipt of recommended health services. Parents completed a survey about behavioral challenges, co-occurring conditions, health services, and the Patient-Reported Outcomes Measurement Information System Global Health Measure and the Aberrant Behavior Checklist to assess QoL and behavior symptoms, respectively.

RESULTS:

Analysis included 530 children. Challenging behaviors were reported by the majority of parents (93%), frequently noting attention-deficit/hyperactivity disorder symptoms, irritability, and anxiety. Mean (SD) scores on the Aberrant Behavior Checklist hyperactivity and irritability subscales were 17.9 (10.5) and 13.5 (9.2), respectively. The Patient-Reported Outcomes Measurement Information System Global Health Measure total score of 23.6 (3.7) was lower than scores reported in a general pediatric population. Most children had received recommended well-child (94%) and dental (85%) care in the past 12 months.

CONCLUSIONS:

This baseline data (1) affirmed the focus on addressing challenging behaviors; (2) prioritized 3 behavior domains, that of attention-deficit/hyperactivity disorder, irritability, and anxiety; and (3) identified targets for reducing severity of behaviors and strategies to improve data collection.




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The Autism Treatment Network: Bringing Best Practices to All Children With Autism

The Autism Treatment Network and Autism Intervention Research Network on Physical Health were established in 2008 with goals of improving understanding of the medical aspects of autism spectrum disorders. Over the past decade, the combined network has conducted >2 dozen clinical studies, established clinical pathways for best practice, developed tool kits for professionals and families to support better care, and disseminated these works through numerous presentations at scientific meetings and publications in medical journals. As the joint network enters its second decade continuing this work, it is undergoing a transformation to increase these activities and accelerate their incorporation into clinical care at the primary care and specialty care levels. In this article, we describe the past accomplishments and present activities. We also outline planned undertakings such as the establishment of the Autism Learning Health Network, the increasing role of family members as co-producers of the work of the network, the growth of clinical trials activities with funding from foundations and industry, and expansion of work with primary care practices and autism specialty centers. We also discuss the challenges of supporting network activities and potential solutions to sustain the network.




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Harrington WE, Mato S, Burroughs L, Carpenter PA, Gershon A, Schmid DS, Englund JA. Vaccine Oka Varicella Meningitis in Two Adolescents. Pediatrics. 2019;144(6):e20191522




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More than two million passengers at Berlin airports in January / Passenger numbers decline as expected

As expected, the number of passengers at Berlin airports fell in January. Tegel and Schönefeld dealt with a total of 2,252,265 passengers, 6.9% fewer than in the same month last year.




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Coronavirus: Passengers entering UK 'to be quarantined for two weeks' to halt spread

People arriving in the UK could be forced to quarantine for two weeks to halt the spread of coronavirus under plans for the "second phase" of the Government's response.




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Coronavirus: Visitors to UK face 'two weeks in quarantine'

Quarantining people arriving from abroad is being “actively” looked at, a senior member of the UK Government has admitted, as criticism mounts over the country dragging its feet compared to other parts of the world.




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Special Education Bias Rule Put on Hold for Two Years by DeVos Team

As expected, the Education Department has delayed a rule that would require states to take a standardized approach in evaluating districts for minority bias in special education.




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Letters: Now is the ideal time for a two-track approach to Covid-19

YOU report (HeraldScotland, May 5) that Professor Neil Ferguson, one of the UK government’s key advisers on the current lockdown restrictions, has resigned after breaching the government (and his own) strong advice on the need for social distancing.




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Herald Diary: A tale of two drivers

Balls up




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Herald Diary: 'Six o’ wan and two-thirds o’ the other'

Head boy




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Pathological Video Game Use Among Youths: A Two-Year Longitudinal Study

Several correlational studies documented that participants who would be classified as "pathological" video gamers demonstrate a pattern of correlations with other variables that are comorbid (eg, depression) or occur with (eg, poorer grades and increased hostility) other addictions.

Following a large sample across 2 years, this study provides needed data on risk factors for becoming a pathological gamer, how long pathological gaming lasts, outcomes, and whether it is a primary problem or is a symptom of comorbid problems. (Read the full article)




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The Distribution of Physical Activity in an After-school Friendship Network

New, effective approaches to obesity prevention are urgently needed. Social network interventions warrant our attention. Social networks play a significant role in adult and adolescent obesity. The role of social networks in pediatric obesity has not been examined.

Afterschool friendship ties play a critical role in setting physical activity patterns in children as young as 5 to 12 years. Children’s activity levels can be changed by the activity level of their social network during a 12-week afterschool program. (Read the full article)




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Two-Year Follow-Up of an Adolescent Behavioral Weight Control Intervention

Comprehensive lifestyle interventions for adolescent weight management, including diet, physical activity, and behavioral intervention, have been found to demonstrate modest, short-term success. However, very little is known about the long-term effectiveness of adolescent behavioral weight management trials.

This randomized controlled trial demonstrates that two 16-week group-based behavioral weight loss programs, when combined with either aerobic exercise or peer-based adventure therapy, produced sustained improvements in BMI among overweight/obese adolescents through 24 months. (Read the full article)




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The Experience of Families With Children With Trisomy 13 and 18 in Social Networks

Trisomy 13 and 18 are conditions with 1-year survival rates of less than 10% and have traditionally been treated with palliative care. There are increasing reports of ethical dilemmas caused by parental requests for clinical interventions.

Parents who belong to social networks report an enriching family experience and describe surviving children as happy. Many of these parents describe challenging encounters with health care providers. (Read the full article)




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Antecedents of Neonatal Encephalopathy in the Vermont Oxford Network Encephalopathy Registry

Most term and late preterm infants with neonatal encephalopathy have not had recognized asphyxial birth events. Several nonasphyxial risk factors for neonatal encephalopathy have been identified in previous studies.

In a large sample, we confirm the association of several nonasphyxial factors with neonatal encephalopathy, including markers of intrauterine exposure to infection or inflammation, intrauterine fetal growth restriction, and birth defects. We identify steps that would improve studies of neonatal encephalopathy. (Read the full article)




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Comparison of One-Tier and Two-Tier Newborn Screening Metrics for Congenital Adrenal Hyperplasia

The false-positive rate of newborn screening for classic congenital adrenal hyperplasia (CAH) remains high and has not been significantly improved by adjusting 17α-hydroxyprogesterone cutoff values for birth weight and/or gestational age. In response, 4 states have initiated second-tier steroid profile screening.

Under second-tier screening, the false-positive rate remains high, and classic CAH cases missed by screening (false-negatives) occur more frequently than reported. Physicians are cautioned that a negative screen does not necessarily rule out CAH. (Read the full article)




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Secondary Sexual Characteristics in Boys: Data From the Pediatric Research in Office Settings Network

Recent investigations of pubertal onset in US girls suggest earlier maturation. The situation for US boys is unknown, and existing investigations are outdated and lack information on a key physical marker of male puberty: testicular enlargement.

US boys appear to be developing secondary sexual characteristics and achieving testicular enlargement 6 months to 2 years earlier than commonly used norms, with African American boys entering Tanner stages 2 to 4 earlier than white or Hispanic boys. (Read the full article)




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The Impact of Social Networks on Parents' Vaccination Decisions

Previous studies have suggested that health care providers, family members, friends, and others play a role in shaping parents’ vaccination decisions. Other research has suggested that the media can influence whether parents decide to vaccinate their children.

Through the application of social network analysis, this study formally examines and quantifies how parents are influenced by the people and sources around them. Its findings suggest that social networks are important, particularly for parents who do not completely vaccinate. (Read the full article)




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Two-Year Outcomes of a Randomized Controlled Trial of Inhaled Nitric Oxide in Premature Infants

Bronchopulmonary dysplasia is associated with increased long-term neurodevelopmental and respiratory morbidity. Inhaled nitric oxide given to reduce morbidity in very preterm infants does not reduce the prevalence of bronchopulmonary dysplasia and has uncertain effects on long-term outcome.

Inhaled nitric oxide (5 ppm) given early in the course of respiratory illness in infants born before 29 weeks of gestation is not associated with changes in developmental or respiratory outcomes at 2 years of age corrected for prematurity. (Read the full article)




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Impact of a Routine Two-Dose Varicella Vaccination Program on Varicella Epidemiology

The 1-dose childhood varicella vaccination program in the United States resulted in dramatic declines in varicella incidence, hospitalizations, and deaths. There is little information on the impact of the 2006 recommendation for 2-dose varicella vaccination of children on varicella epidemiology.

In the first 5 years of the 2-dose varicella vaccination program, declines in varicella incidence were seen in all age groups, including infants who are not eligible for varicella vaccination, providing evidence of the benefit of high population immunity. (Read the full article)




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Two-Year Impact of the Alternative Quality Contract on Pediatric Health Care Quality and Spending

Payment arrangements that blend global budgets with pay-for-performance are proliferating. However, little is known about how these contracts affect pediatric health care quality and spending for children with and without special health care needs receiving care from large provider organizations.

A prototypical global budget contract significantly improved preventive care quality measures tied to pay-for-performance, especially for children with special health care needs. It did not alter trends for spending or for quality measures that were not tied to pay-for-performance. (Read the full article)




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Regional Variation in Antenatal Corticosteroid Use: A Network-Level Quality Improvement Study

Application of antenatal corticosteroids to mothers before delivery is highly beneficial to very low birth weight infants. Yet despite widespread quality improvement efforts, many eligible infants fail to receive this therapy.

We demonstrate improvement in antenatal corticosteroid use during the study period. However, significant regional variation persists, which network-level quality improvement efforts might help eliminate. (Read the full article)




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Two-Year Outcomes of a Population-Based Intervention for Preschool Language Delay: An RCT

Preschool language delay predicts poorer academic performance, employment opportunities, and social relationships. Language for Learning, a systematic, population-based intervention for 4-year-olds with low language, is feasible, acceptable and has short-term benefits, but long-term benefits are unknown.

Population ascertainment at age 4 followed by a yearlong, one-on-one home program benefited phonological skills (an important literacy determinant) at age 6, but not the primary language outcomes. To be cost-effective, future follow-up would need to demonstrate lasting academic benefits. (Read the full article)




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Two Great Valley professors awarded seed grants for COVID-19 research

Ashkan Negahban, assistant professor of engineering management, and Satish Srinivasan, assistant professor of information science, will lead projects that help address the COVID-19 crisis, thanks to seed grants from the Huck Institutes of the Life Sciences.




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Iceland stun Germany to end two-decade run

It had been 19 years since Germany lost a qualifier but Iceland ended that run in stunning style with a 3-2 away win that finished some incredible runs by the twice world champions.




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Eberly College of Science selects two student marshals for Spring 2020

Chemistry major Sojung Kim and microbiology major Cuyler Luck will represent the Eberly College of Science as student marshals during Penn State’s virtual spring commencement ceremonies on Saturday, May 9.




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Score a Nikon DSLR Camera, Two Lenses For Less Than $600

This bundle normally sells for $1,149.95 but is available right now for just $596.95, and it will arrive before Christmas with Prime.




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Complex response of the CpxAR two-component system to {beta}-lactams on antibiotic resistance and envelop homeostasis in Enterobacteriaceae [Mechanisms of Resistance]

The Cpx stress response is widespread among Enterobacteriaceae. We have previously reported a mutation in cpxA in a multidrug resistant strain of Klebsiella aerogenes isolated from a patient treated with imipenem. This mutation yields to a single amino acid substitution (Y144N) located in the periplasmic sensor domain of CpxA. In this work, we sought to characterize this mutation in Escherichia coli by using genetic and biochemical approaches. Here, we show that cpxAY144N is an activated allele that confers resistance to β-lactams and aminoglycosides in a CpxR-dependent manner, by regulating the expression of the OmpF porin and the AcrD efflux pump, respectively. We also demonstrate the intimate interconnection between Cpx system and peptidoglycan integrity on the expression of an exogenous AmpC β-lactamase by using imipenem as a cell wall active antibiotic or inactivation of penicillin-binding proteins. Moreover, our data indicate that the Y144N substitution abrogates the interaction between CpxA and CpxP and increase phosphotransfer activity on CpxR. Because the addition of a strong AmpC inducer such as imipenem is known to causes abnormal accumulation of muropeptides (disaccharide-pentapeptide, N-acetylglucosamyl-1,6-anhydro-N-acetylmuramyl-l-alanyl-d-glutamy-meso-diaminopimelic-acid-d-alanyl-d-alanine) in the periplasmic space, we propose these molecules activate the Cpx system by displacing CpxP from the sensor domain of CpxA. Altogether, these data could explain why large perturbations to peptidoglycan caused by imipenem lead to mutational activation of the Cpx system and bacterial adaptation through multidrug resistance. These results also validate the Cpx system, in particular the interaction between CpxA and CpxP, as a promising therapeutic target.




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In vitro and in vivo antibiotic capacity of two host defence peptides [Mechanisms of Action]

Two non-amidated host defence peptides named Pin2[G] and FA1 were evaluated against three types of pathogenic bacteria; two isolated from diabetic foot ulcer patients, Staphylococcus aureus UPD13 and Pseudomonas aeruginosa UPD3, and another from a commercial collection, Salmonella enterica serovar Typhimurium (ATCC 14028). In vitro experiments showed that the antimicrobial performance of the synthetic peptides, Pin2[G] and FA1, was modest, although FA1 was more effective than Pin2[G]. In contrast Pin2[G] had superior in vivo anti-infective activity to FA1 in rabbit wound infections by the diabetic foot ulcer pathogens S. aureus UPD13 and P. aeruginosa UPD3. Indeed, Pin2[G] reduced bacterial colony counts of both S. aureus UPD13 and P. aeruginosa UPD3 by >100,000-fold after 48-72 h on skin wounds of infected rabbits, while in similar infected wounds, FA1 had no major effects at 72-96 h of treatment. Ceftriaxone was equally effective vs. Pseudomonas but less effective vs. S. aureus infections. Additionally, the two peptides were evaluated in mice against intragastrically inoculated S. enterica ser. Typhimurium (ATCC 14028). Only Pin2[G], at 0.56 mg/kg, was effective in reducing systemic (liver) infection by >67-fold, equivalent to the effect of treatment with levofloxacin. Pin2[G] showed superior immunomodulatory activity in increasing chemokine production by a human bronchial cell line and suppressing poly(IC)-induced pro-inflammatory IL6 production. These data showed that the in vitro antimicrobial activity of these peptides was not correlated with their in vivo anti-infective activity, and suggest that other factors such as immunomodulatory activity were more important.




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Student Engagement Network announces newest members of Faculty Academy

The Student Engagement Network's Faculty Academy funds projects developed by Penn State faculty that result in transformative experiences that complement student engagement.




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How to Set Up a Wi-Fi Mesh Network

Spotty Wi-Fi in certain areas of you home? A mesh network system can bring seamless connectivity to every corner. Here's what you need to know to choose the right system and set it up for optimal performance.




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The Best Wi-Fi Mesh Network Systems for 2020

Have a larger home with Wi-Fi dead zones? A multi-node system might be a better solution than a traditional wireless router with extenders. Here are the best Wi-Fi mesh network systems we've tested in our labs.




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Two education majors share role of student marshal

While Beane’s and Hunsicker’s paths to Penn State Berks were somewhat different, they arrived at the same destination, well prepared for careers in education.




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Variations in Practice and Outcomes in the Canadian NICU Network: 1996-1997

Shoo K. Lee
Nov 1, 2000; 106:1070-1079
ARTICLES




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Secondary Sexual Characteristics and Menses in Young Girls Seen in Office Practice: A Study from the Pediatric Research in Office Settings Network

Marcia E. Herman-Giddens
Apr 1, 1997; 99:505-512
ARTICLES




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Neurodevelopmental and Functional Outcomes of Extremely Low Birth Weight Infants in the National Institute of Child Health and Human Development Neonatal Research Network, 1993-1994

Betty R. Vohr
Jun 1, 2000; 105:1216-1226
ARTICLES




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Late-Onset Sepsis in Very Low Birth Weight Neonates: The Experience of the NICHD Neonatal Research Network

Barbara J. Stoll
Aug 1, 2002; 110:285-291
ARTICLES




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Neonatal Outcomes of Extremely Preterm Infants From the NICHD Neonatal Research Network

Barbara J. Stoll
Sep 1, 2010; 126:443-456
ARTICLES




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Invent Penn State Innovation Hub Network pivots to offer digital resources

Across Pennsylvania, the Invent Penn State innovation hub network has pivoted to deliver needed programming and services online, by providing online mentoring, webinars, virtual speaker series, and a Virtual Idea TestLab.




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Two student journalists among placewinners in Keystone Media Awards

Entries from two Penn State students were among winners in categories for professional television journalists as part of the Keystone Media Awards.




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Does Two-Factor Authentication Really Make You Safer?

Two-factor authentication, or 2FA, is becoming increasingly common, but one reader points out that it seems easy to get around its protection. Is he right? Security expert Max Eddy takes a look.




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Two dedicated COVID-19 clinics available through Penn State Health Medical Group

Penn State Health has opened two regional clinics to care for patients with confirmed or suspected COVID-19 who have health care needs that are serious enough to warrant a face-to-face appointment.




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Report: Huawei Allegedly Built North Korea's 3G Network

The Washington Post report may force the White House to reconsider relaxing trade restrictions on Huawei, which is currently blacklisted from sourcing components from US technology suppliers.




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Report: Huawei Will Have Access to the UK's 5G Network

Prime Minister Boris Johnson will reportedly announce the news before year's end, in a move that could disrupt relationships between the UK and US government.




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The Best NAS (Network Attached Storage) Devices for 2020

Connected storage is more versatile storage, but that's just one of the many benefits of buying a NAS device. We've tested the top models to tell you which one will work best for your home or small business.




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Two Turkish clubs banned from UEFA competitions

038 - Romanian club handed deferred sanction




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UEFA Appeals Body bans two Turkish clubs from UEFA competitions

042 - Decisions made after Beşiktaş JK and Fenerbahçe SK appeal initial decision




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Thirty-two countries declare interest for UEFA EURO 2020 bid

051 - Decision on 13 final tournament hosts to be taken in September 2014