Pregnant women report being denied medications to treat severe nausea and vomiting of pregnancy or hyperemesis gravidarum - findings from an Australian online survey.

We conducted an online survey of 249 Australian women who currently or previously experienced severe nausea and vomiting of pregnancy (NVP) or hyperemesis gravidarum (HG) and examined their experiences in being denied medications during pregnancy. One in four women reported being denied medications for NVP/HG, which most commonly involved doxylamine and encounters with community pharmacists. Women's experiences reflected that lack of awareness of guidelines and unfavourable risk-benefit assessments appeared to be key barriers to facilitating medication access. Approaches towards identifying and effectively addressing barriers to the provision of effective treatments for severe NVP and HG are urgently needed.

Toward the Development of a Culturally Humble Intervention to Improve Glycemic Control and Quality of Life among Adolescents with Type-1 Diabetes and Their Families.

Type-1 Diabetes (T1D) is a prevalent and costly disorder associated with substantial morbidity that differentially impacts low-income and/or minority adolescents and their families. The primary study objective was to develop a guiding model to inform culturally humble interventions for Mid-southern youth with T1D presenting with multiple correlates of suboptimal glycemic control and their families. In order to develop a clinic specific guiding model, conceptualizations of health, the need/type of intervention thought to be most helpful, the optimal structure, and strategies to improve the cultural/regional fit was ascertained from (A) youth with T1D (n = 13) and caregivers (n = 11) via qualitative interviews and, (B) pediatric endocrinologists and nurse practitioners (n = 6), and (C) nurses, diabetes educators, dietitians, and social workers (n = 9) via focus groups. Qualitative themes were synthesized to guide the treatment development model whereby Quality of Life and Glycemic Control would be directly enhanced by interventions to promote Coping, Support, Education, and Improved Psychosocial Functioning and indirectly through improved Adherence and T1D Autonomy delivered in a culturally humble way that affirms youths' T1D identify. These finding suggest that existing evidence-based treatments may provide a great fit for low-income, and/or minority youth with T1D and their families living in the mid-south, provided these interventions are delivered in culturally humble manner.

Health-Related Quality of Life of Children with Congenital Adrenal Hyperplasia: A Mixed Methods Study.

PURPOSE: The purpose of this study was to examine the health-related quality of life (HRQOL) of female children with CAH as reported by children and their caregivers. DESIGN AND METHODS: A convergent mixed methods design was selected whereby quantitative and qualitative results were merged to provide a comprehensive understanding of HRQOL of children. Semi-structured interviews were conducted with 20 child-caregiver dyads. The full sample of child-caregiver dyads (N = 25) completed KINDL-R questionnaires, which provided a quantitative measure of children's HRQOL. RESULTS: Children and their caregivers reported good overall HRQOL. Children scored significantly lower on the KINDL-R School subscale compared to their caregivers. Associations were observed between the HRQOL score from one graphic rating scale item and the child's other health issues and child's diagnosis. Themes emerging from the child and caregiver interviews were health-related quality of life, impact of stigma on psychological well-being, information-sharing and disclosure of CAH, and improving the quality of life of children with CAH. CONCLUSION: This mixed methods study provided evidence to understand the health and complex needs of children with CAH. IMPLICATIONS: Clinicians may better support children and caregivers by expanding the focus beyond medication management to include: 1) psychological support and resources (i.e., developmentally appropriate coping and adaptation strategies); 2) continuous education for clinical staff, school nurses, emergency medical transport staff, and providers; and 3) public awareness beyond the clinic and hospital settings.

How Peer Conflict Profiles and Socio-Demographic Factors Influence Type 1 Diabetes Adaptation.

OBJECTIVE: This study aimed to (a) validate the factor structure for a measure of peer conflict in youth with type 1 diabetes (T1D); (b) determine empirical patterns of peer conflict in terms of context (friend vs. nonfriend) and content (diabetes-specific vs. general) within a broader context of socio-demographic factors; and (c) examine how these patterns and socio-demographic factors relate to adolescents' T1D adherence, quality of life, and glycemic control (HbA1c). METHODS: Youth with T1D (N = 178), ages 12-18, reported demographic variables, illness duration, adherence, quality of life, and peer conflict. HbA1c was extracted from medical records. Confirmatory factor analysis validated a factor structure for the Diabetes Peer Conflict Scale (DPCS) and latent profile analysis (LPA) determined profiles of peer conflict. RESULTS: A four-factor structure emerged for the DPCS: general friend conflict, general nonfriend conflict, T1D friend conflict, and T1D nonfriend conflict. Using these factors as indicators in LPA, four profiles were confirmed: (a) Low Overall Conflict (LOC) and (b) Moderate Overall Conflict (MOC), (c) a Nonfriend Conflict (NFC), and (d) a Friend Conflict (FC) profile. Differences were not identified between diabetes specific versus general conflict. Socio-demographic variables did not predict class membership. The LOC profile reported the highest quality of life and best glycemic control, whereas the FC profile reported the lowest adherence behaviors. Conclusions: Peer conflict uniquely contributes to diabetes adaptation above and beyond socio-demographic and illness factors.

Living with an invisible illness: a qualitative study exploring the lived experiences of female children with congenital adrenal hyperplasia.

PURPOSE: Many chronic illnesses are self-evident. However, disorders like congenital adrenal hyperplasia (CAH) are invisible to the naked eye and unnoticeable to others. Therefore, invisible illness is often a shared, misconstrued experience for children with CAH, their caregivers, and the medical community. This experience, along with its lack of awareness and added stigma, may impact overall quality of life (QOL) of such individuals. To facilitate our understanding of QOL of children with CAH, we must first explore their subjective experiences. This study aimed to capture their lived experiences and provide recommendations to support children with CAH. METHODS: We conducted semi-structured interviews with 20 female children with CAH between 7 and 18 years and their caregivers. Interviews were transcribed verbatim, checked for accuracy, and independently coded by the first and second author. Content analysis was used to organize data so that codes could be condensed into categories and themes. Differences around code, category, and theme description were reconciled. RESULTS: Participants' experiences were described in five themes: (1) Making sense of the situation; (2) Emotional and psychological impact of an invisible illness; (3) Normalcy; (4) Disclosure of diagnosis; and (5) Improving the care of children with CAH CONCLUSION: Exploring children's views about living with an invisible illness illuminated individual aspects contributing to our in-depth understanding of experiences of children with CAH. Ongoing education and awareness of CAH is necessary to help mitigate the stigma associated with living with CAH.

Validity, Reliability, and Measurement Invariance of the Diabetes Stress Questionnaire-Short Form.

OBJECTIVE: The purpose of this study was to develop a short form of the Diabetes Stress Questionnaire (DSQ) with adequate psychometric properties (i.e., internal consistency, convergent, criterion, discriminant validity, construct validity, and measurement invariance). METHODS: In total, 181 youth with type 1 diabetes (T1D) completed the 65-item DSQ, and archival data were obtained from 142 youth with T1D to serve as an independent cross-validation sample. Twenty-four items were chosen to retain the original eight scales of the DSQ and to maximize internal consistency and correlations to full subscales. Confirmatory factor analyses were used to evaluate the proposed factor structure of the Diabetes Stress Questionnaire-Short Form (DSQ-SF) and to assess invariance of the DSQ-SF across sex, race, grade level, glycemic control, illness duration, and annual income categories. RESULTS: The 24-item DSQ-SF was found to have good internal consistency, factor structure and fit, correlated highly to the full scale (r = .98), and was invariant across sex, race, grade level (<9th grade or >9th grade), glycemic control, illness duration, and annual income. CONCLUSIONS: The DSQ-SF appears to be a psychometrically robust measure of diabetes-specific stress in youth with T1D. Present findings suggest that the DSQ-SF has the potential to be a useful, quick, cost-effective, and comprehensive screening tool for identifying youth with T1D who may benefit from T1D-specific stress reduction interventions as a way to improve health behaviors, psychosocial well-being, and glycemic control.

Snacking characteristics and patterns and their associations with diet quality and BMI in the Childhood Obesity Prevention and Treatment Research Consortium.

OBJECTIVE: To describe snacking characteristics and patterns in children and examine associations with diet quality and BMI. DESIGN: Children's weight and height were measured. Participants/adult proxies completed multiple 24 h dietary recalls. Snack occasions were self-identified. Snack patterns were derived for each sample using exploratory factor analysis. Associations of snacking characteristics and patterns with Healthy Eating Index-2010 (HEI-2010) score and BMI were examined using multivariable linear regression models. SETTING: Childhood Obesity Prevention and Treatment Research (COPTR) Consortium, USA: NET-Works, GROW, GOALS and IMPACT studies. PARTICIPANTS: Predominantly low-income, racial/ethnic minorities: NET-Works (n 534, 2-4-year-olds); GROW (n 610, 3-5-year-olds); GOALS (n 241, 7-11-year-olds); IMPACT (n 360, 10-13-year-olds). RESULTS: Two snack patterns were derived for three studies: a meal-like pattern and a beverage pattern. The IMPACT study had a similar meal-like pattern and a dairy/grains pattern. A positive association was observed between meal-like pattern adherence and HEI-2010 score (P for trend < 0⋅01) and snack occasion frequency and HEI-2010 score (ß coefficient (95 % CI): NET-Works, 0⋅14 (0⋅04, 0⋅23); GROW, 0⋅12 (0⋅02, 0⋅21)) among younger children. A preference for snacking while using a screen was inversely associated with HEI-2010 score in all studies except IMPACT (ß coefficient (95 % CI): NET-Works, -3⋅15 (-5⋅37, -0⋅92); GROW, -2⋅44 (-4⋅27, -0⋅61); GOALS, -5⋅80 (-8⋅74, -2⋅86)). Associations with BMI were almost all null. CONCLUSIONS: Meal-like and beverage patterns described most children's snack intake, although patterns for non-Hispanic Blacks or adolescents may differ. Diets of 2-5-year-olds may benefit from frequent meal-like pattern snack consumption and diets of all children may benefit from decreasing screen use during eating occasions.

Gender Moderates Chronic Nicotine Cigarette Effects on Verbal Memory in Young Adults.

Background: Rates of nicotine use remain a prominent public health concern, especially among young adults. Previous findings have demonstrated that chronic exposure to nicotine during adolescence may be linked to various neurocognitive deficits. Nicotine differentially affects the brain by gender. Objectives: The present study investigated the effects of gender and chronic nicotine use on cognition in the developing brain. Methods: From 2008 to 2011, 57 young adult (ages 18-25) participants were recruited as part of a larger cross-sectional neuroimaging study and divided into 21 nicotine users (12 female) and 36 non-using controls (17 female). Participants completed various questionnaires, drug use interview, neuropsychological battery, and MRI scan in a university setting. A series of multiple regressions was conducted with nicotine group and gender*nicotine group interaction as predictors. Results: After controlling for gender, nicotine group status alone was not associated with neuropsychological performance. A gender x nicotine interaction was significantly associated with performance on trial 1, short delay free recall, and long delay free recall of the CVLT-II. Female smokers demonstrated better performance on trial 1 and short and long delay free recall than female controls. Male smokers performed more poorly than male controls on short and long delay free recall. Conclusions: These preliminary findings suggest that cognitive effects of chronic nicotine use are moderated by gender. Further research is needed to determine causality, and identify underlying brain structures and function that may be responsible for differences in verbal memory.

Intranasally Administered Human MSC-Derived Extracellular Vesicles Pervasively Incorporate into Neurons and Microglia in both Intact and Status Epilepticus Injured Forebrain.

Extracellular vesicles (EVs) derived from human bone marrow mesenchymal stem cells (hMSCs) have great promise as biologics to treat neurological and neurodegenerative conditions due to their robust antiinflammatory and neuroprotective properties. Besides, intranasal (IN) administration of EVs has caught much attention because the procedure is noninvasive, amenable for repetitive dispensation, and leads to a quick penetration of EVs into multiple regions of the forebrain. Nonetheless, it is unknown whether brain injury-induced signals are essential for the entry of IN-administered EVs into different brain regions. Therefore, in this study, we investigated the distribution of IN-administered hMSC-derived EVs into neurons and microglia in the intact and status epilepticus (SE) injured rat forebrain. Ten billion EVs labeled with PKH26 were dispensed unilaterally into the left nostril of naïve rats, and rats that experienced two hours of kainate-induced SE. Six hours later, PKH26 + EVs were quantified from multiple forebrain regions using serial brain sections processed for different neural cell markers and confocal microscopy. Remarkably, EVs were seen bilaterally in virtually all regions of intact and SE-injured forebrain. The percentage of neurons incorporating EVs were comparable for most forebrain regions. However, in animals that underwent SE, a higher percentage of neurons incorporated EVs in the hippocampal CA1 subfield and the entorhinal cortex, the regions that typically display neurodegeneration after SE. In contrast, the incorporation of EVs by microglia was highly comparable in every region of the forebrain measured. Thus, unilateral IN administration of EVs is efficient for delivering EVs bilaterally into neurons and microglia in multiple regions in the intact or injured forebrain. Furthermore, incorporation of EVs by neurons is higher in areas of brain injury, implying that injury-related signals likely play a role in targeting of EVs into neurons, which may be beneficial for EV therapy in various neurodegenerative conditions including traumatic brain injury, stroke, multiple sclerosis, and Alzheimer's disease.

Psychological Flexibility Among Youth with Type 1 Diabetes: Relating Patterns of Acceptance, Adherence, and Stress to Adaptation.

Psychological flexibility, a complex concept encompassing both acceptance and action related factors, has been identified as a target for intervention for diabetes management. Research suggests acceptance, self-management, and stress, all factors that influence psychological flexibility, have an impact on adaptation to type 1 diabetes (T1D) by youth independently. However, yet to be explored is individually varying patterns of these variables and how they may relate to diabetes adaptation outcomes. The present study aimed to establish individual variations of patterns of these factors to derive profiles of psychological flexibility, and examine their relations to the adaptation outcomes of glycemic control and health-related quality of life. Youth (N = 162, aged 12-17 years) with T1D completed the Acceptance and Action Diabetes Questionnaire, Diabetes Stress Questionnaire, Self-Care Inventory, and Pediatric Quality of Life-Diabetes Module. Hemoglobin A1c values were abstracted from medical records. Latent profile analysis yielded three profiles: High Acceptance & Adherence/Low Stress, Low Acceptance/Moderate Adherence & Stress, and Low Acceptance & Adherence/High Stress. The High Acceptance & Adherence/Low Stress group displayed significantly higher health-related quality of life and lower HbA1c compared to other groups. Fluid psychological variables, such as acceptance and diabetes stress, and adherence behaviors may be salient targets to increase psychological flexibility for individual psychosocial interventions aimed at improving adaptation to type 1 diabetes in youth.

Patterns of Family Functioning and Diabetes-Specific Conflict in Relation to Glycemic Control and Health-Related Quality of Life Among Youth With Type 1 Diabetes.

Objectives: General and diabetes-specific family functioning may be associated with youth's adaptation to type 1 diabetes (T1D); however, empirically derived patterns of family functioning and diabetes-specific conflict among youth have not been explored in relation to T1D adaptation. Methods: Youth (N = 161, aged 12­18) with T1D and caregivers completed measures of family functioning and diabetes-specific conflict that served as indicators in latent profile analyses. Differences in glycemic control (measured by hemoglobin A1cs [HbA1c] and health-related quality of life [HRQoL]) were compared across profiles. Results: Four profiles that varied by levels of family functioning, diabetes-specific conflict, and congruence between youth and caregiver perspectives emerged and related to T1D adaptation differently. Greater agreement between caregiver and youth and lower diabetes-specific conflict was associated with lower HbA1c and greater HRQoL. Conclusions: Person-centered approaches are useful to quantify how many individuals fit into a particular pattern and determine how specific family dynamics may function together differently in relation to T1D adaptation for various subgroups of the population.

Body Mass Index and Intensive Care Unit Outcomes in African American Patients.

PURPOSE: We sought to determine whether body mass index (BMI) is associated with worse intensive care unit (ICU) outcomes among Black patients. METHODS: Patients admitted to the medical ICU during 2012 were categorized into six BMI groups based on the World Health Organization criteria. ICU mortality, ICU and hospital length of stay (LOS), need for and duration of mechanical ventilation and organ failure rate were assessed. RESULTS: A total of 605 patients with mean age 58.9 ± 16.0 years were studied. Compared with those with normal BMI, obese patients had significant higher rates of hypertension, diabetes mellitus and obstructive sleep apnea diagnoses (P<.001 for all). A total of 100 (16.5%) patients died during their ICU stay. Obesity was not associated with increased odds of ICU mortality (OR=.58; 95% CI, .16-2.20). Moreover, improved survival was observed for class II obese patients (OR, .031; 95% CI, .001-.863). There were no differences in the need for and duration of mechanical ventilation between the BMI groups. However, ICU and hospital LOS were significantly longer in patients with obesity. CONCLUSION: Obesity was not associated with increased ICU mortality; however, obesity was associated with increased comorbid illness and with significant longer ICU and hospital length of stay.

Parathyroid Cancer in the Pediatric Patient.

CONTEXT: Parathyroid carcinoma is exceedingly rare in children. We describe a case of parathyroid cancer in a young female who was originally classified as benign and managed surgically. Upon her diagnosis with malignancy, concurrent with metastatic lung involvement, she was referred for medical and surgical palliation to control her symptomatic hypercalcemia. We briefly review published childhood cases, consider the challenges in differentiating malignant from benign hyperparathyroidism in this age group, and discuss the association of CDC73 mutations with parathyroid carcinoma. CASE PRESENTATION: A 13-year-old African American girl with a history of parathyroid adenoma, diagnosed at 8 years of age with multiple recurrences, presented with hypercalcemia and elevated parathyroid hormone when her disease had been reclassified as malignant. Germline gene analysis revealed a heterozygous partial deletion of CDC73. The patient underwent palliative surgery for disease metastatic to her lungs. She continues with medical management of her hypercalcemia. CONCLUSIONS: A case of pediatric parathyroid carcinoma associated with haploinsufficiency of CDC73 is discussed. We review all published cases of pediatric parathyroid carcinoma and offer diagnostic considerations for a parathyroid mass in a child.

Review: Hemodynamic Characteristics and Outcomes of Sickle Cell Disease Associated Pulmonary Hypertension.

Pulmonary hypertension (PH) is a leading cause of morbidity and early mortality in adults with sickle cell disease (SCD). However, the prevalence, hemodynamic profile and prognosis of SCD-PH remain controversial and need frequent updates. Pulmonary hypertension determined by right heart catheterization (RHC) occurs in 6% to 10% of adults with SCD. Hemodynamically, SCD-PH may be pre-capillary or post-capillary in nature. The exact etiology is unknown and often multifactorial; hence a thorough diagnostic evaluation following established PH guidelines is essential to determine disease prevalence, etiology and outcomes. Data on the efficacy and safety of pulmonary arterial hypertension (PAH) therapy are limited in SCD; clinical trials in these patients are urgently needed. This review provides an overview of RHC-determined hemodynamic characteristics, current management modality and outcomes; we also highlight recent advances and unmet research needs in SCD-PH.

Incidence, Risk Factors and Outcomes of New Onset Supraventricular Arrhythmias in African American Patients with Severe Sepsis.

PURPOSE: New onset supraventricular arrhythmias (SVA) are commonly reported in mixed intensive care settings. We sought to determine the incidence, risk factors and outcomes of new onset SVA in African American (AA) patients with severe sepsis admitted to medical intensive care unit (MICU). METHODS: Patients admitted to MICU between January 2012 through December 2012 were studied. Patients with a previous history of arrhythmia or with new onset of ventricular arrhythmia were excluded. Data on risk factors, critical care interventions and outcomes were obtained. RESULTS: One hundred and thirty-one patients were identified. New onset SVA occurred in 34 (26%) patients. Of those 34, 20 (59%) had atrial fibrillation (AF), 6 (18%) had atrial flutter and 8 (24%) had other forms of SVA. Compared with patients without SVA, patients with new onset SVA were older (69 ± 12 yrs vs 59 ± 13 yrs, P=.003), had congestive heart failure (47% vs 24%, P=.015) and dyslipidemia (41% vs 15%, P=.002). Additionally, they had a higher mean mortality prediction model (MPM II) score (65 ± 25 vs 49 ± 26, P=.001) and an increased incidence of respiratory failure (85% vs 55%, P=.001). Hospital mortality in patients with new onset SVA was 18 (53%) vs 30 (31%); P=.024; however, in a multivariate analysis, new onset SVA was associated with non-significantly increased odds (OR 2.58, 95% CI 0.86-8.05) for in-hospital mortality. CONCLUSIONS: New onset SVA was prevalent in AA patients with severe sepsis and occurred more frequently with advanced age, increased severity of illness, congestive heart failure, and acute respiratory failure; it was associated with higher unadjusted in hospital mortality. However, after multiple adjustments, new onset SVA did not remain an independent predictor of mortality.

Assessing measurement invariance of the diabetes stress questionnaire in youth with type 1 diabetes.

OBJECTIVE: To evaluate the factor structure and measurement invariance of the Diabetes Stress Questionnaire (DSQ), a measure of diabetes-specific stress, across sex, age (<9th grade vs. ≥9th grade), and glycemic control (optimal vs. suboptimal). METHODS: Data from 318 adolescent participants were pooled from four archival data sets and the ongoing Predicting Resiliency in Youth with Type 1 Diabetes study in which the DSQ was completed. Confirmatory factor and measurement invariance analyses were conducted to confirm the proposed factor structure and measurement invariance across sex, age, and glycemic control. RESULTS: The DSQ factor structure was found to have an acceptable fit, which was invariant across sex, age, and glycemic control. CONCLUSIONS: When using the DSQ, differences in diabetes-related stress with respect to sex, age, or glycemic control can be considered meaningful. This study supports the DSQ as an evidence-based and well-established assessment of perceived diabetes stress in youth with type 1 diabetes.

Perioperative Evaluation and Management of Children with Osteoporosis and Low Bone Mineral Density.

As medical and surgical treatment options for children with osteoporosis expand, multidisciplinary strategies for bone health optimization become more important. Each patient's bone mineral density and fracture history should be interpreted in context. Off-label bisphosphonate use is a standard pharmacologic intervention for children with osteoporosis for optimal bone accrual. It is possible to continue this therapy perioperatively under certain circumstances. The rare side effects (osteonecrosis of the jaw and atypical femur fractures) seem less common in children. Physical therapy, vitamin D supplementation, and other interventions are also important tools for optimal bone health perioperatively and for satisfactory surgical outcomes.

Evolutionary conservation of putative suicidality-related risk genes that produce diminished motivation corrected by clozapine, lithium and antidepressants.

Background: Genome wide association studies (GWAS) and candidate gene analyses have identified genetic variants and genes that may increase the risk for suicidal thoughts and behaviors (STBs). Important unresolved issues surround these tentative risk variants such as the characteristics of the associated genes and how they might elicit STBs. Methods: Putative suicidality-related risk genes (PSRGs) were identified by comprehensive literature search and were characterized with respect to evolutionary conservation, participation in gene interaction networks and associated phenotypes. Evolutionary conservation was established with database searches and BLASTP queries, whereas gene-gene interactions were ascertained with GeneMANIA. We then examined whether mutations in risk-gene counterparts in C. elegans produced a diminished motivation phenotype previously connected to suicide risk factors. Results and conclusions: From the analysis, 105 risk-gene candidates were identified and found to be: 1) highly conserved during evolution, 2) enriched for essential genes, 3) involved in significant gene-gene interactions, and 4) associated with psychiatric disorders, metabolic disturbances and asthma/allergy. Evaluation of 17 mutant strains with loss-of-function/deletion mutations in PSRG orthologs revealed that 11 mutants showed significant evidence of diminished motivation that manifested as immobility in a foraging assay. Immobility was corrected in some or all of the mutants with clozapine, lithium and tricyclic antidepressant drugs. In addition, 5-HT2 receptor and muscarinic receptor antagonists restored goal-directed behavior in most or all of the mutants. These studies increase confidence in the validity of the PSRGs and provide initial clues about possible mechanisms that mediate STBs.