Preparedness of Speech Language Pathologists and Occupational Therapists to Treat Pediatric Feeding Disorder: A Cross-Sectional Survey.

BACKGROUND: Pediatric feeding disorder (PFD) is increasingly common and is often treated by speech language pathologists (SLPs) and occupational therapists (OTs) in the community setting. However, the preparedness of these disciplines to effectively address PFD is relatively unknown. METHODS: A national (US), online survey was disseminated to providers who assess and treat PFD. For the present analysis, the responses of SLPs (N = 418) and OTs (N = 195) related to their clinical background, educational background, post-graduate training, and self-rated clinical effectiveness were statistically analyzed and compared across the two disciplines. RESULTS: Both SLPs and OTs report feeling underprepared to work with PFD clients immediately following their academic training, but time spent in post-graduate training and years of clinical practice both significantly (p < 0.0001) increased feelings of effectiveness in assessing and treating PFD. Most SLPs and OTs pursued self-directed learning activities to increase competence, with the most common activities being article review, podcasts, and peer case review, although SLPs were significantly more likely to use podcasts (p < 0.0001) and peer review (p = 0.0004) than OTs. The most common barriers for providers were financial, time, travel, and institutional support barriers. CONCLUSIONS: While PFD is a key practice area of both SLPs and OTs, both provider groups feel unprepared and under-supported in providing competent care to these patients upon graduation. Future research and policy should support advancements in training for current SLPs and OTs related to PFD and address current barriers to a specialized educational pathway.

Financial Stressors for Parents of Children and Emerging Adults With Congenital Heart Disease: A Qualitative Study.

INTRODUCTION: Congenital heart disease (CHD) is the most prevalent congenital disability globally. This study aimed to describe parents' perspectives on financial stressors related to having a child with CHD using a descriptive qualitative approach. METHOD: Qualitative data were obtained from parents of children with CHD in a cross-sectional web-based survey study. Iterative data analysis was used to develop essential themes that enabled a rich description of 147 parents' perspectives. RESULTS: Parents identified five financial stressors: perpetual worries about health insurance, facing the dilemma of "making too much money," struggling to balance work, worrying over having an emerging adult with CHD, and constant constraints because of financial needs. DISCUSSION: As experts in pediatric care, pediatric advanced practice providers need to work with policymakers to provide further financial assistance and sufficient insurance coverage for families that struggle to balance finances for the whole family and children with CHD.

Acceptance of bite presentations and feeding behaviors of 8 to 12-month-old infants: A reflection of typical feeding development.

PURPOSE: The lack of age-appropriate expectations for feeding acceptance patterns in early childhood is a barrier to early and accurate identification of pediatric feeding disorder (PFD). The objective of the study was to describe the process by which typically developing children 8-12 months of age accept or refuse bite presentations and their corresponding feeding behaviors, aiming to establish age-appropriate normative data for feeding acceptance. METHOD: Using cross-sectional methodology, we studied the proportion of bite presentations accepted, the type of feeding behaviors-passive, disruptive, expulsion, feeding concerns- observed at presentation and acceptance or refusal, and the duration between presentation to acceptance or refusal in 63 healthy infants between 8 and 12 months of age. Descriptive statistics and a one-way ANOVA were conducted to compare the effect of age and texture. RESULTS: Findings reveal high levels of bite acceptance of 80 % or > for children across ages, but with lower texture-specific differences. Both passive and disruptive behaviors were present even during acceptance of bites without any expulsion. Feeding concerns showed developmental trends with rapid reduction by 12 months suggesting improvement in oral feeding skills. The duration of acceptance and refusals revealed clear patterns by age and texture with an average of 3 s for acceptance but <1 s for refusal. CONCLUSIONS: This study describes bite acceptance patterns in a cohort of typically developing infants between 8 and 12 months of age by examining the acceptance of bites, frequency and type of feeding behaviors, and duration differences when children accept versus refuse a bite. Findings may be applied in the future to provide more sensitive detection of problematic feeding patterns to aid in the detection of pediatric feeding disorder.

Uncertainty Management in Online Sexual Health Forums.

Sexual health is critical to overall well-being, yet it is challenging and uncomfortable to discuss. Individuals frequently encounter uncertainty about their sexual health as they experience bodily changes, navigate romantic or sexual relationships, and explore their identities. In this study, we called on uncertainty management theory to guide an investigation of sexual health uncertainty. Specifically, we asked how people use social support to manage their sexual health uncertainty in online forums. Grounded theory analyses revealed that negative emotions, avoidance, and pursuing medical care prompted people to seek emotional and informational support online, and support served three functions: integrating information, assessing risk, and strategizing communication. The results point to stigma as a driving force in sexual health discussions online and imply practical recommendations for sexual education, communication about sexual topics, and patient-provider relationships.

The Massachusetts Department of Public Health Post Overdose Support Team Initiative: A Public Health-Centered Co-Response Model for Post-Overdose Outreach.

CONTEXT: Post-overdose outreach programs have emerged in response to surging overdose deaths amid fentanyl contamination of the illicit opioid supply. Predominantly centered in police departments in collaboration with public health providers, these programs conduct home-based outreach with survivors and their social networks following an overdose. APPROACH: We describe implementation of the Post Overdose Support Team (POST) initiative, an ongoing public health funded and centered approach. Post Overdose Support Team is a person-centered model led by harm reductionists in health and human services agencies in collaboration with municipal first responders. The goal of POST is to engage overdose survivors and their social network to improve general health, connect people to services (including access to treatment, if desired), and reduce risk of subsequent overdose. IMPLEMENTATION: Nine agencies in Massachusetts that are part of the state's overdose education and naloxone distribution network implemented POST programs, covering 28 municipalities. The POST teams conduct home-based outreach with individuals who experienced an opioid-related overdose to provide a menu of services, including naloxone rescue kits, overdose response and risk reduction planning, referral to treatment for substance use disorders, including medication for opioid use disorder, and referral to recovery and family supports. EVALUATION: From October 2017 to October 2021, the POST teams attempted to reach 5634 overdose survivors via 10 536 outreach visits. Teams successfully engaged 3014 survivors, either directly or through contact with their social network (53.5% success rate). Using data from a real-time encounter-level database, monthly peer-sharing calls with program sites, and annual site visits, we describe the implementation of the POST initiative and provide practice-based recommendations and lessons learned. DISCUSSION: Early evidence suggests that the POST initiative is meeting its goal to engage overdose survivors, improve general health, and reduce subsequent overdose risk. Future evaluations should examine long-term outcomes among participants, including service linkages and incremental behavior change.

The associations between resilience and socio-demographic factors in parents who care for their children with congenital heart disease.

Objective: To examine the resilience of parents of children with congenital heart disease and to investigate socio-demographic factors that may influence parents' resilience. Methods: This is a web-based survey study using a cross-sectional design. A purposive sampling method was utilized to recruit 515 parents who care for children with congenital heart disease. Resilience was assessed using the Dispositional Resilience Scale-Ⅱ. Based on expert-interviews, a questionnaire was designed to collect socio-demographic data. Descriptive statistics, factor analysis, and linear regressions were used to analyze data. Results: A total of 413 parents completed the survey study. The mean resilience score was 3.75 (SD = 0.61; range = 1.89-4.89) with higher scores indicating higher resilience. The linear regression models demonstrated that parents who had lower education levels and lower gross household income had lower resilience (P < 0.05). Conclusions: Parents reported resilience that reflected their ability to cope with stressful events and mitigate stressors associated with having and caring for children with congenital heart disease. Lower education levels and lower gross household income are associated with lower resilience. To increase parents' resilience, nursing practice and nurse-led interventions should target screening and providing support for parents at-risk for lower resilience. As lower education level and financial hardship are factors that are difficult to modify through personal efforts, charitable foundations, federal and state governments should consider programs that would provide financial and health literacy support for parents at-risk for lower resilience.

Retrospective Case-Control Study of Communication and Motor Abilities in 143 Children With Suspected Childhood Apraxia of Speech: Effect of Concomitant Diagnosis.

Purpose: This study sought to determine if children with childhood apraxia of speech (CAS) plus another major diagnosis (CAS+) are equivalent in communication and motor profiles to those with a primary diagnosis of CAS and no indication or report of any other diagnosis (CAS-Primary). Method: This retrospective case-control study included a chart review of 143 children who were suspected of having CAS at Children's Hospital-Wisconsin between 1998 and 2004. Participants were between 30 and 127 months old and included 107 males. Participants were assigned to the suspected CAS-Primary group (n = 114) if they had characteristics of CAS but no other major diagnosis (e.g., galactosemia) and to the CAS+ group (n = 29) if a comorbid diagnosis was present. Groups were compared across demographic, communication, and motor characteristics. Results: Children with CAS+ evidenced more severe motor profiles than those with CAS-Primary, χ2 = (1, n = 122) = 4.952, p = .026, and a small-to-medium effect size (Φ = .201). On average, communication profiles also tended to be more severe among those with CAS+ wherein receptive language was poorer and phonemic inventories were smaller than those with CAS-Primary. Conclusions: These retrospective data suggest that comorbid diagnosis may play an important role in communication and motor development in children with suspected CAS. These exploratory findings should motivate future prospective studies that consider the role of concomitant diagnoses in symptom profile and response to treatment in children with CAS.

Texture Consumption Patterns of 8- to 12-Month-Old Infants: A Reflection of Typical Feeding Development.

Purpose The lack of age-appropriate expectations for the acquisition of feeding skills and consumption of textured food in early childhood inhibits early and accurate identification of developmental delay in feeding and pediatric feeding disorder. The objective of this study was to describe texture intake patterns in a cohort of typically developing infants between 8 and 12 months of age, with the aim of informing future research to establish targets for feeding skill acquisition. Method Using cross-sectional methodology, we studied the presence of liquid and solid textures and drinking methods in the diet, consumption patterns by texture and drinking methods, and caloric intake by texture via caregiver questionnaire and 3-day dietary intake record in 63 healthy infants between 8 and 12 months of age. Descriptive statistics and a one-way analysis of variance were conducted to compare the effect of age on texture intake patterns. Results Findings reveal rapid advancement of intake patterns for texture overall and for energy intake by texture between 8 and 12 months of age. Whereas liquids continue to provide a large proportion of total energy through this time, solids contribute an equal proportion of energy by 12 months of age. Conclusions This study describes texture intake patterns in a cohort of typically developing infants between 8 and 12 months of age by examining the presence of texture and drinking methods, liquid and solid consumption patterns, and energy intake by texture. When applied to data from a future population sample, findings will provide a threshold for age expectations for typical and disordered feeding development to aid in the detection of developmental delay in feeding and pediatric feeding disorder. What Is Known: Expectations regarding early feeding development have been focused on nutrition parameters. Lack of standardized, age-appropriate expectations for texture progression in infancy and early childhood inhibits early and accurate identification and treatment of pediatric feeding disorder. What Is New: We have described changes in dietary composition by texture and drinking method in healthy infants. Together with nutritional composition, this study describes a more comprehensive assessment of infant feeding, particularly to clinicians who need to diagnose feeding skill deficits. Supplemental Material https://doi.org/10.23641/asha.16879615.

Parents' Perceptions of Emerging Adults With Congenital Heart Disease: An Integrative Review of Qualitative Studies.

BACKGROUND: As the primary caregivers for children with congenital heart disease (CHD), parents' perceptions are important for emerging adults to achieve independence. This integrative review of qualitative studies aimed to describe parents' perceptions of emerging adults with CHD. METHOD: Seven electronic databases were searched. Data extraction and quality assessment were performed. A meta-synthesis was conducted to inductively develop essential themes from five included studies. RESULTS: Three essential themes encompassing the parents' perspective of emerging adults with CHD were: (1) concerns about emerging adults' ability to be independent; (2) concerns about emerging adults' future; and (3) impact of disease on family. The themes depicted parents' concerns and worries about their children's ability to successfully achieve independence, especially in disease self-management and life goals. DISCUSSION: This review highlights parents' concerns about their emerging adult children's independence. Understanding these concerns allows for developing interventions to facilitate emerging adults' independence and ease parents' worries.

UAE1 inhibition mediates the unfolded protein response, DNA damage and caspase-dependent cell death in pancreatic cancer.

The Unfolded Protein Response (UPR) plays a key role in the adaptive response to loss of protein homeostasis within the endoplasmic reticulum (ER). The UPR has an adaptive function in protein homeostasis, however, sustained activation of the UPR due to hypoxia, nutrient deprivation, and increased demand for protein synthesis, alters the UPR program such that additional perturbation of ER homeostasis activates a pro-apoptotic program. Since ubiquitination followed by proteasomal degradation of misfolded proteins within the ER is a central mechanism for restoration of ER homeostasis, inhibitors of this pathway have proven to be valuable anti-cancer therapeutics. Ubiquitin activating enzyme 1(UAE1), activates ubiquitin for transfer to target proteins for proteasomal degradation in conjunction with E2 and E3 enzymes. Inhibition of UAE1 activity in response to TAK-243, leads to an accumulation of misfolded proteins within the ER, thereby aggravating ER stress, leading to DNA damage and arrest of cells in the G2/M phase of the cell cycle. Persistent drug treatment mediates a robust induction of apoptosis following a transient cell cycle arrest. These biological effects of TAK-243 were recapitulated in mouse models of PDAC demonstrating antitumor activity at a dose and schedule that did not exhibit obvious normal tissue toxicity. In vitro as well as studies in mouse models failed to show enhanced efficacy when TAK-243 was combined with ionizing radiation or gemcitabine, providing an impetus for future studies to identify agents that synergize with this class of agents for improved tumor control in PDAC. SIGNIFICANCE: The UAE1 inhibitor TAK-243, mediates activation of the unfolded protein response, accumulation of DNA breaks and apoptosis, providing a rationale for the use as a safe and efficacious anti-cancer therapeutic for PDAC.

Alternative approach to pediatric cardiac quality assessment for low-volume centers.

BACKGROUND: In pediatric cardiac care, many centers participate in multiple, national, domain-specific registries, as a major component of their quality assessment and improvement efforts. Small cardiac programs, whose clinical activities and scale may not be well-suited to this approach, need alternative methods to assess and track quality. METHODS: We conceived of and piloted a rapid-approach cardiac quality assessment, intended to encompass multiple aspects of the service line, in a low-volume program. The assessment incorporated previously identified measures, drawn from multiple sources, and ultimately relied on retrospective chart review. RESULTS: A collaborative, multidisciplinary team formed and came to consensus on quality metrics pertaining to 3 chosen areas of clinical activity in the program. Despite the use of multiple different data sources and the need for manual chart review in data collection, a rich assessment of these program components was completed for presentation in 6 weeks. CONCLUSIONS: While small programs may not participate in the spectrum of cardiac care registries available, these same centers can benefit from them by adapting some of their validated metrics for use in internal, self-maintained quality reports. Our pilot of this alternative approach revealed opportunities for improved quality assessment practices; the product can serve as a baseline for future prospective assessment and reporting, as well as longitudinal internal benchmarking.

Activation of the Unfolded Protein Response via Inhibition of Protein Disulfide Isomerase Decreases the Capacity for DNA Repair to Sensitize Glioblastoma to Radiotherapy.

Patients with glioblastoma multiforme (GBM) survive on average 12 to 14 months after diagnosis despite surgical resection followed by radiotheraphy and temozolomide therapy. Intrinsic or acquired resistance to chemo- and radiotherapy is common and contributes to a high rate of recurrence. To investigate the therapeutic potential of protein disulfide isomerase (PDI) as a target to overcome resistance to chemoradiation, we developed a GBM tumor model wherein conditional genetic ablation of prolyl 4-hydroxylase subunit beta (P4HB), the gene that encodes PDI, can be accomplished. Loss of PDI expression induced the unfolded protein response (UPR) and decreased cell survival in two independent GBM models. Nascent RNA Bru-seq analysis of PDI-depleted cells revealed a decrease in transcription of genes involved in DNA repair and cell-cycle regulation. Activation of the UPR also led to a robust decrease in RAD51 protein expression as a result of its ubiquitination-mediated proteosomal degradation. Clonogenic survival assays demonstrated enhanced killing of GBM cells in response to a combination of PDI knockdown and ionizing radiation (IR) compared with either modality alone, which correlated with a decreased capacity to repair IR-induced DNA damage. Synergistic tumor control was also observed with the combination of PDI inhibition and IR in a mouse xenograft model compared with either single agent alone. These findings provide a strong rationale for the development of PDI inhibitors and their use in combination with DNA damage-inducing, standard-of-care therapies such as IR. SIGNIFICANCE: These findings identify PDIA1 as a therapeutic target in GBM by demonstrating efficacy of its inhibition in combination with radiotherapy through a novel mechanism involving downregulation of DNA repair genes.Graphical Abstract: http://cancerres.aacrjournals.org/content/canres/79/11/2923/F1.large.jpg.

Pediatric Feeding Disorder: Consensus Definition and Conceptual Framework.

Pediatric feeding disorders (PFDs) lack a universally accepted definition. Feeding disorders require comprehensive assessment and treatment of 4 closely related, complementary domains (medical, psychosocial, and feeding skill-based systems and associated nutritional complications). Previous diagnostic paradigms have, however, typically defined feeding disorders using the lens of a single professional discipline and fail to characterize associated functional limitations that are critical to plan appropriate interventions and improve quality of life. Using the framework of the World Health Organization International Classification of Functioning, Disability, and Health, a unifying diagnostic term is proposed: "Pediatric Feeding Disorder" (PFD), defined as impaired oral intake that is not age-appropriate, and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction. By incorporating associated functional limitations, the proposed diagnostic criteria for PFD should enable practitioners and researchers to better characterize the needs of heterogeneous patient populations, facilitate inclusion of all relevant disciplines in treatment planning, and promote the use of common, precise, terminology necessary to advance clinical practice, research, and health-care policy.

A Grounded Theory of Students' Long-Distance Coping With a Family Member's Cancer.

In this study, we explore how family members cope with one source of stress-cancer diagnosis and treatment. We suggest that coping away from one's family is characterized by constraints that are not common to proximal coping. We conducted six focus groups with college students (N = 21) at a university in the United States to investigate their long-distance coping experiences and used grounded theory methods to develop a model of college students' long-distance coping. Negotiating the tension between being here (at school) and being there (at home) was central to their experiences. Participants described four manifestations of their negotiation between here and there (i.e., expressing/hiding emotion, longing to care for the patient there/avoiding responsibility here, feeling shock at degeneration there/escaping degeneration by being here, and lacking information from there) and three strategies they used to cope (i.e., being here and withdrawing, being here and doing school, and seeking/not seeking support).

Highly selective 2,4-diaminopyrimidine-5-carboxamide inhibitors of Sky kinase.

We report the SAR around a series of 2,4-diaminopyrimidine-5-carboxamide inhibitors of Sky kinase. 2-Aminophenethyl analogs demonstrate excellent potency but moderate kinase selectivity, while 2-aminobenzyl analogs that fill the Ala571 subpocket exhibit good inhibition activity and excellent kinase selectivity.

Life expectancy after Mohs micrographic surgery in patients aged 90 years and older.

BACKGROUND: The population of people aged 90 years and older is expected to more than triple by 2050. The incidence of skin cancers is increasing. OBJECTIVE: We sought to determine whether treatment of patients aged 90 years and older with skin cancer by Mohs micrographic surgery (MMS) changed their survival. METHODS: A group of 214 patients aged 90 years and older who underwent MMS from July 1997 to May 2006 was identified. Patient gender, age, tumor type, size, site, defect size, number of MMS stages, and surgical repair were recorded. Comorbid medical conditions were assessed using the Charlson index. Actual survival was compared with expected length of survival using life tables. Data were analyzed by the Kaplan-Meier method with log rank significance tests. RESULTS: Average patient age was 92.3 years. All patients tolerated the procedures well with no deaths within 1 month after surgery. Median survival after surgery was 36.9 months. Tumor characteristics, defect size, number of surgical stages, and closure type did not affect survival. There was no significant difference in survival based on comorbidities according to Charlson scores. Instantaneous mortality hazard was highest 2 to 3 years after surgery. LIMITATIONS: Specific causes of death were not accessible. CONCLUSION: This growing section of the population may safely undergo MMS.

Themes of relational uncertainty and interference from partners in depression.

This article draws on the relational turbulence model to illuminate the dynamics of depression in romantic relationships using a thematic analysis of online discourse. Three content areas of relational uncertainty were apparent: (a) depression uncertainty (questions about physical harm, source of depression, and understanding), (b) self and partner uncertainty (questions about helplessness and identity), and (c) relationship uncertainty (questions about physical intimacy, relationship satisfaction, and the future of the relationship). Three content areas of interference from partners also emerged: (a) daily routines (disruptions to household tasks; finances, work, and school; children and parenting; and family and social life), (b) personal well-being (disruptions to health and safety as well as treatment), and (c) the relationship (disruptions to sexual activity, emotional intimacy, and openness). Relational uncertainty and interference from partners coincided in people's experiences in seven ways. The article concludes by discussing the conceptual, empirical, and pragmatic implications of the findings.

Novel and selective spiroindoline-based inhibitors of Sky kinase.

We report the discovery of a novel series of spiroindoline-based inhibitors of Sky kinase that bind in the ATP-binding site and exhibit high levels of kinome selectivity through filling the Ala571-subpocket. These inhibitors exhibit moderate oral bioavailability in the rat due to low absorption across the gut wall.

Complications of tissue ischemia in dermatologic surgery.

Ischemic complications in cutaneous surgery can be devastating. Tissue ischemia can result from improper technique or closure design (i.e., increased tension), inadequate hemostasis, or infection, all of which result in decreased blood supply to the surgical site. Knowledge of patient characteristics that affect blood supply to the surgical site, including comorbid conditions, medications and behaviors (i.e., tobacco and alcohol use), is essential. Also, a thorough understanding of cutaneous anatomy, principles of surgical design, coupled with meticulous technique will minimize the likelihood of ischemic complications. Prompt recognition of hematoma, infection and impending ischemia/necrosis, and proper treatment of such complications, can minimize poor outcomes.

Outcomes of tonsillectomy in neurologically impaired children.

OBJECTIVES/HYPOTHESIS: Children with neurologically impaired (NI) swallow can undergo tonsillectomy safely and effectively. STUDY DESIGN: Retrospective review. METHODS: Forty-five children with documented dysphagia were compared to age- and procedure-matched normal children for operating room and clinical experience. Three further studies were limited to the NI children only: preoperative and postoperative video swallow studies (VSS), and polysomnography (PSG) for sleep-disordered breathing history. Long-term telephone follow-up of clinical outcomes was performed. RESULTS: There were no differences between the two groups measured by tonsil size or intraoperative or late post-tonsillectomy hemorrhage, but lowest measured oxygen levels were statistically different. No intraoperative complications, early post-tonsillectomy hemorrhage, hospital readmission, or mortality occurred in either group. Three NI children each had an episode of aspiration pneumonia (early or late) without sequelae. Of the 32 VSS available for review, postoperative aspiration incidence was significantly improved, but with new-onset aspiration occurring in five children. Of available matched pre- and postoperative PSG, 91% confirmed resolution of identified preoperative obstructive sleep apnea. Long-term telephone follow-up of 20 NI children revealed improved breathing (95%), communication (90%), and feeding efficiency (55%). CONCLUSIONS: This study suggests tonsillectomy in NI children can be performed safely with appropriate monitoring and precautions with a 48-hour hospital postoperative stay recommended. Swallowing safety appears to improve both objectively and subjectively in most NI children following tonsillectomy. Both preoperative and postoperative VSS are recommended for any NI child undergoing tonsillectomy. Long-term follow-up identified improved quality of life measures for the majority of the NI children queried.