Caring for Children with Special Health Care Needs: Profiling Pediatricians and Their Health Care Resources.

Background and Objectives Pediatricians face numerous challenges in providing care for children with special health care needs (CSHCN). Few studies have described health care resources available to support pediatricians to care for CSHCN. This study investigated available resources to care for CSHCN and factors associated with having a greater proportion of CSHCN in practice. Methods We conducted a statewide survey of active members of the American Academy of Pediatrics in California to study pediatric subspecialty care access, community and office resources and practice barriers. We performed a logistic regression model on having an "above average proportion" of CSHCN in practice, adjusting for demographics, practice type (rural vs. suburban/urban) and medical resources, care satisfaction, and ease of subspecialty access. Results Our response rate was 50.2% (n = 1290); 75% of respondents reported providing some primary care services, with many primary care pediatricians caring for a high proportion of CSHCN. Pediatricians reported an average of 28% CSHCN in their practices. Rural pediatricians lacked subspecialty access (10-59% reporting no access to the various subspecialties). Factors relating to higher CSHCN in practice included being in academic medical centers and satisfaction in caring for CSHCN. Conclusions Pediatricians report lack of access to mental health services, care coordination and case management. Academic medical centers and higher physician satisfaction in care delivery for CSHCN are associated with more CSHCN in practice. Promoting ways to support pediatricians, such as practice collaboration with behavioral specialists, may be necessary to encourage primary care pediatricians to provide medical homes for CSHCN.

Self-management and Transition to Adult Health Care in Adolescents and Young Adults: A Team Process.

As health care continues to evolve, the need for more effective health care transition (HCT) for all youth, but particularly children with chronic conditions and special health care needs, becomes even more important. With more than 90% of adolescents with chronic medical conditions now surviving into adulthood, suboptimal transition can lead to poorer quality of life and less successful adulthood.Through a series of clinical vignettes, the challenges of HCT are presented herein and accompanied by comments that underscore how these adolescents can best be helped to transition to successful adulthood. Several methods are presented to assess the readiness of adolescents and young adults (AYA) for transition. The process of transition can be divided into 3 stages: 1) setting the stage: initiation of HCT services and transition readiness assessment, 2) moving forward: ongoing provision of HCT services, and 3) reaching the goal: transfer of care and transition to adulthood.Several valuable suggestions for incorporating the HCT process into the health care system and improving HCT programs through a quality improvement (QI) approach are outlined. Future challenges in HCT include developing more precise assessments of transition status or transition readiness, better understanding the status and specific needs of AYA with chronic health care needs, continued program evaluation and QI efforts, and more reliance on patients and families to teach us about the challenges and methods in HCT that most effectively work for them.

The Role of Health Advocacy in Transitions from Pediatric to Adult Care for Children with Special Health Care Needs: Bridging Families, Provider and Community Services.

BACKGROUND: Youth and young adults with special healthcare needs (YASHCN) experience challenges during transition from pediatric to adult care. Prior studies have not examined how community and healthcare resources can work together to assist YASHCN in transitioning from child-focused care and services to adult-oriented providers. OBJECTIVE: The aim of this study was to develop a theoretical understanding of how family, healthcare providers and community supports can assist YASHCN during the transition from pediatric to adult healthcare and services. DESIGN/METHODS: We conducted 41 semi-structured interviews with YASHCN aged 16-25, their family members and healthcare and community providers. We focused our interviews on support mechanisms, both within the traditional healthcare system, and those available in the community. Using grounded theory methods, we performed a multi-step analysis process. RESULTS: The theoretical code "Transition Advocacy" was developed from the data. This theoretical perspective arose from three major categories, which were developed in the analysis: "Fighting for healthcare", "Obtaining resources", and "Getting ready to transition". Transition Advocacy consists of the presence of, or need for, a healthcare "advocate" who did or can assist the YASHCN with the healthcare transition, particularly to navigate complex health or community services. The "advocate" role was performed by family members, healthcare or agency professionals, or sometimes the YASHCN themselves. If advocates were identified, youth were more likely to obtain needed services. CONCLUSIONS: Parents, health providers, and community agencies are potentially well-poised to assist transitioning YASHCN. Efforts to encourage development of strong advocacy skills will facilitate better transitions for YASHCN.

Post-Acute Sequelae of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) After Infection During Pregnancy.

OBJECTIVE: To estimate the prevalence of post-acute sequelae of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection (PASC) after infection with SARS-CoV-2 during pregnancy and to characterize associated risk factors. METHODS: In a multicenter cohort study (NIH RECOVER [Researching COVID to Enhance Recovery]-Pregnancy Cohort), individuals who were pregnant during their first SARS-CoV-2 infection were enrolled across the United States from December 2021 to September 2023, either within 30 days of their infection or at differential time points thereafter. The primary outcome was PASC, defined as score of 12 or higher based on symptoms and severity as previously published by the NIH RECOVER-Adult Cohort, at the first study visit at least 6 months after the participant's first SARS-CoV-2 infection. Risk factors for PASC were evaluated, including sociodemographic characteristics, clinical characteristics before SARS-CoV-2 infection (baseline comorbidities, trimester of infection, vaccination status), and acute infection severity (classified by need for oxygen therapy). Multivariable logistic regression models were fitted to estimate associations between these characteristics and presence of PASC. RESULTS: Of the 1,502 participants, 61.1% had their first SARS-CoV-2 infection on or after December 1, 2021 (ie, during Omicron variant dominance); 51.4% were fully vaccinated before infection; and 182 (12.1%) were enrolled within 30 days of their acute infection. The prevalence of PASC was 9.3% (95% CI, 7.9-10.9%) measured at a median of 10.3 months (interquartile range 6.1-21.5) after first infection. The most common symptoms among individuals with PASC were postexertional malaise (77.7%), fatigue (76.3%), and gastrointestinal symptoms (61.2%). In a multivariable model, the proportion PASC positive with vs without history of obesity (14.9% vs 7.5%, adjusted odds ratio [aOR] 1.65, 95% CI, 1.12-2.43), depression or anxiety disorder (14.4% vs 6.1%, aOR 2.64, 95% CI, 1.79-3.88) before first infection, economic hardship (self-reported difficulty covering expenses) (12.5% vs 6.9%, aOR 1.57, 95% CI, 1.05-2.34), and treatment with oxygen during acute SARS-CoV-2 infection (18.1% vs 8.7%, aOR 1.86, 95% CI, 1.00-3.44) were associated with increased prevalence of PASC. CONCLUSION: The prevalence of PASC at a median time of 10.3 months after SARS-CoV-2 infection during pregnancy was 9.3% in the NIH RECOVER-Pregnancy Cohort. The predominant symptoms were postexertional malaise, fatigue, and gastrointestinal symptoms. Several socioeconomic and clinical characteristics were associated with PASC after infection during pregnancy. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov, NCT05172024.

Characterization of Japanese encephalitis virus infection in an immortalized mesencephalic cell line, CSM14.1.

Neurons are the major target cell of Japanese encephalitis virus (JEV). Rats intracerebrally inoculated with JEV show an age-dependent pattern of resistance to infection in which resistance is closely associated with neuronal maturation. However, because there is no reliable and convenient cell culture system that mimics the in vivo properties of JEV infection of immature and mature neurons, the mechanisms underlying this association remain poorly understood. The aim of the present study was to examine JEV infection in immortalized CSM14.1 rat neuronal cells, which can be induced to differentiate into neurons by culture under non-permissive conditions. JEV infected undifferentiated CSM14.1 cells more efficiently than differentiated cells, resulting in production of more progeny virus in the former setting than in the latter. An infectious virus recovery assay detected more internalized virions in undifferentiated cells. On the other hand, JEV infection of differentiated cells induced more rapid and stronger expression of interferon-ß gene, along with smaller amounts of JEV RNA. Taken together, these results show that the initial phase of viral infection and the later IFN response play roles in the viral susceptibility of undifferentiated and differentiated CSM14.1 cells. Because CSM14.1 cells became more resistant to JEV infection as they mature, this culture system can be used as an in vitro model for studying age-dependent resistance of neurons to JEV infection.

Socioeconomic Factors Are Associated With Severity of Hospitalization in Pediatric Lupus: An Analysis of the 2016 Kids' Inpatient Database.

OBJECTIVE: Health disparities in adult lupus, including higher disease severity and activity among those in poverty, have been identified. Similar associations in pediatric lupus have not been clearly established. This study was undertaken to investigate the relationship of income level and other socioeconomic factors with length of stay (LOS) in the hospital and severe lupus features using the 2016 Kids' Inpatient Database (KID). METHODS: Lupus hospitalizations were identified in children ages 2-20 years in the 2016 KID using International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) codes (M32). Univariate and multivariate negative binomial regression analyses were used to analyze the association of income level, race and ethnicity, and insurance status with LOS in the hospital. Univariate and multivariate logistic regression analyses were used to analyze the association of the same predictors with the presence of severe lupus features, defined using ICD-10 codes associated with lupus sequelae (e.g., lupus nephritis). RESULTS: A total of 3,367 unweighted (4,650 weighted) lupus hospitalizations were identified. Income level was found to be a statistically significant predictor of increased LOS in the hospital for those in the lowest income quartile (adjusted incidence rate ratio 1.12 [95% confidence interval (95% CI) 1.02-1.23]). Black race, "other" race, and public insurance were also associated with severe lupus features (adjusted odds ratio [ORadj ] 1.51 [95% CI 1.11-2.06]; ORadj 1.61 [95% CI 1.01-2.55]; and ORadj 1.51 [95% CI 1.17-2.55], respectively). CONCLUSION: Using a nationally representative data set, income level was found to be a statistically significant predictor of LOS in the hospital among those with the lowest reported income, highlighting a potential target population for intervention. Additionally, Black race and public insurance were associated with severe lupus features.

Impairment Types and Combinations Among Adolescents and Young Adults with Disabilities: Colorado 2014-2018.

OBJECTIVE: Understanding the types of functional challenges faced by adolescents and young adults with disabilities (AYA-WD) can help payers, clinicians, community-based service providers, and policymakers recognize and meet needs. This paper describes state-level prevalence rates for 1) AYA-WD overall and for 2) impairment types singly and in combinations; and 3) examines how rates may differ between those insured by Medicaid versus commercial insurance. METHODS: This descriptive study uses Colorado's All Payer Claims Dataset 2014-2018 to identify insured 10- to 26-year-olds (Medicaid only: 333,931; commercially only: 392,444). It then applies the previously validated Children with Disabilities Algorithm (CWDA) and its companion, the Diagnosis-to-Impairment-Type Algorithm (DITA), to compare state-level prevalence rates by insurance source for disability overall and for each of five impairment types singly and in combination. RESULTS: Disability prevalence was greater among the Medicaid-insured AYA-WD by +7.6% points (pp)-Medicaid: 11.9% (47,654/333,931), commercial: 4.3% (16,907/392,444). Most AYA-WD had a single impairment, but the prevalence of AYA-WD with two or more impairments was greater among the Medicaid-insured than the commercially insured (+9.9 pp; Medicaid: 33.5% [15,963/47,654], commercial: 23.7% [3992/16, 907]), as was the prevalence of impairment types that were physical (+6.7 pp; Medicaid: 54.7% [26,054/47,654], commercial: 48.0% [8121/16,907]); developmental (+4.1 pp; Medicaid: 35.4% [16,874/47,654], commercial: 31.3% [5290/16,907]); psychiatric (+6.7 pp; Medicaid 21.3% [10,175/47,654], commercial: 14.6% [2470/16,907]), and intellectual (+9.3 pp; Medicaid: 26.2% [12,501/47,654], commercial: 16.9% [2858/16,907]). CONCLUSIONS: CWDA and DITA can be used to understand the rates at which impairment types and combinations occur in a population with childhood-onset disabilities.

Peripheral muscle weakness in RASopathies.

INTRODUCTION: RASopathies are a group of genetic conditions due to alterations of the Ras/MAPK pathway. Neurocutaneous findings are hallmark features of the RASopathies, but musculoskeletal abnormalities are also frequent. The objective was to evaluate handgrip strength in the RASopathies. METHODS: Individuals with RASopathies (e.g., Noonan syndrome, Costello syndrome, cardio-facio-cutaneous [CFC] syndrome, and neurofibromatosis type 1 [NF1]) and healthy controls were evaluated. Two methods of handgrip strength were tested: GRIP-D Takei Hand Grip Dynamometer and the Martin vigorimeter. A general linear model was fitted to compare average strength among the groups, controlling for confounders such as age, gender, height, and weight. RESULTS: Takei dynamometer: handgrip strength was decreased in each of the syndromes compared with controls. Decreased handgrip strength compared with sibling controls was also seen with the Martin vigorimeter (P < 0.0001). CONCLUSIONS: Handgrip strength is decreased in the RASopathies. The etiology of the reduced muscle force is unknown, but likely multifactorial.

Investigating Protective Factors Associated With Mental Health Outcomes in Sexual Minority Youth.

PURPOSE: The aim of this study is to identify and evaluate the efficacy of adolescent protective factors against mental health (MH) outcomes in young adulthood of sexual minority identifying youth (SMY). METHODS: Using data from the National Longitudinal Study of Adolescent to Adult Health, we identified potential protective factors (e.g., individual factors like self-esteem, family factors like family communication, and community factors like caring teachers) at baseline (1994) when the sample was school-aged for SMY. SMY included those who identified their sexual identity as mostly heterosexual, bisexual, mostly homosexual, or 100% homosexual. MH outcomes (depression, anxiety, or suicidality) were assessed at 14-year follow-up. RESULTS: Approximately 14,800 youth completed baseline and follow-up surveys, where 13.5% identified as SMY. Of SMY, 57% had a MH outcome compared to 37% of non-SMY (p < .05). Not all factors were protective for SMY. At the individual level, emotional well-being (adjusted odds ratio [AOR] .56, 95% confidence interval [CI] .41-.78) and self-esteem (AOR .79, 95% CI .66-.95) were found to be protective for MH outcomes in regression models. At the family level, family connectedness (AOR .82, 95% CI .71-.95) was found to be protective. At the community level, school connectedness (AOR .78, 95% CI .66-.92) and caring teachers (AOR .76, 95% CI .58-.99) were found to be protective for SMY. CONCLUSION: Factors at the individual, family, and community (e.g., caring teachers) levels appear to be protective against MH outcomes unique to SMY. Developing interventions focused on protective factors have potential to prevent health disparities.

Improving Health Care Transitions for Children and Youth With Special Health Care Needs.

Health care transitions (HCT) from pediatric to adult health care remain a challenge for children and youth with special health care needs (CYSHCN), their families and their clinicians. While the HCT literature has expanded, gaps remain in how to improve health outcomes during transitions. HCTs broadly encompass three key domain areas: transition planning, transfer to adult health care clinicians or an adult model of care, and integration into an adult care/model of care. The CYSHCNet national research agenda development process, described in a previous article, prioritized several key research areas to address deficiencies in the HCT process. The highest priority questions identified were "What are the best models to accomplish youth-adult transition planning? How might this translate to other transitions (eg, to new clinicians, new settings, new schools, etc.)?" and "How do gaps in insurance and community supports during early adulthood effect CYSHCN health outcomes, and how can they be reduced?". Based upon these priorities, we describe the current state of transition research and recommendations for future investigation. Recommendations: The authors recommend 3 primary areas of investigation: 1) Understanding the optimal development and implementation of HCT service models in partnership with youth and families to improve transition readiness and transfer 2) Defining the process and outcome measures that capture adequacy of transition-related activities and 3) Evaluating fiscal policies that incentivize the processes of transition readiness development, transfer to adult health care services, and continuity of care within an adult health care setting. This article explores approaches within each research domain.

Are We Reaching Everyone? A Cross-Sectional Study of Telehealth Inequity in the COVID-19 Pandemic in an Urban Academic Pediatric Primary Care Clinic.

The COVID-19 (coronavirus disease 2019) pandemic brought rapid expansion of pediatric telehealth to maintain patient access to care while decreasing COVID-19 community spread. We designed a retrospective, serial, cross-sectional study to investigate if telehealth implementation at an academic pediatric practice led to disparities in health care access. Significant differences were found in pre-COVID-19 versus during COVID-19 patient demographics. Patients seen during COVID-19 were more likely to be younger, White/Caucasian or Asian, English speaking, and have private insurance. They were less likely to be Black/African American or Latinx and request interpreters. Age was the only significant difference in patient demographics between in-person and telehealth visits during COVID-19. A multivariate regression showed older age as a significant positive predictor of having a video visit and public insurance as a significant negative predictor. Our study demonstrates telehealth disparities based on insurance existed at our clinic as did inequities in who was seen before versus during COVID-19.

Paradoxical effects of chondroitin sulfate-E on Japanese encephalitis viral infection.

Glycosaminoglycans (GAGs) have diverse functions in the body and are involved in viral infection. The purpose of this study was to evaluate the possible roles of the E-disaccharide units GlcAß1-3GalNAc(4,6-O-disulfate) of chondroitin sulfate (CS), a GAG involved in neuritogenesis and neuronal migration, in Japanese encephalitis virus (JEV) infection. Soluble CS-E (sCS-E) derived from squid cartilage inhibited JEV infection in African green monkey kidney-derived Vero cells and baby hamster kidney-derived BHK cells by interfering with viral attachment. In contrast, sCS-E enhanced viral infection in the mouse neuroblastoma cell line Neuro-2a, despite the fact that viral attachment to Neuro-2a cells was inhibited by sCS-E. This enhancement effect in Neuro-2a cells seemed to be related to increased viral RNA replication and was also observed in a rat infection model in which intracerebral coadministration of sCS-E with JEV in 17-day-old rats resulted in higher brain viral loads than in rats infected without sCS-E administration. These results show the paradoxical effects of sCS-E on JEV infection in different cell types and indicate that potential use of sCS-E as an antiviral agent against JEV infection should be approached with caution considering its effects in the neuron, the major target of JEV.

Adherence to Child Attention-Deficit/Hyperactivity Disorder Treatment Guidelines in Medical Homes-Results from a National Survey.

OBJECTIVE: Having primary care delivered through a medical home is believed to improve mental health care delivery to children. Children with attention-deficit/hyperactivity disorder (ADHD) are commonly treated in pediatric practices, yet little is known about ADHD treatment patterns in medical homes. Our objective was to assess for treatment variation depending on parent-perceived medical home (PPMH) status. We hypothesized that having a PPMH would be associated with receiving ADHD treatments recommended by clinical guidelines. METHODS: We used the 2016 National Survey of Children's Health-a nationally representative cross-sectional survey of children in the United States. Analyses included an unweighted sample of 4,252, representing 5.4 million children aged 3 to 17 years with parent-reported ADHD. Child characteristics were analyzed using descriptive statistics. Associations between ADHD treatment types and PPMH status were assessed using a multinomial logistic regression, adjusting for child characteristics. RESULTS: Having a PPMH was associated with increased prevalence odds of children's receipt of medications alone for ADHD (vs no treatment). The prevalence odds of receiving behavioral treatment alone (vs medications alone) for ADHD decreased by 43% when children had a PPMH (95% confidence interval, 0.38-0.85, p = 0.01). PPMH status was not associated with a statistically significant difference in prevalence odds of receiving combination treatment (vs medications alone) for pediatric ADHD. CONCLUSION: Having a PPMH was associated with children's receipt of ADHD medications alone, but not behavioral treatments. Our findings suggest that medical homes may need further improvement to ensure that children with ADHD receive treatments as recommended by clinical guidelines.

Early Peanut Introduction and Testing: A Framework for General Pediatrician Beliefs and Practices.

Background: Peanut introduction guidelines have undergone significant reversal since 2001 from recommending delayed introduction to rescinding the recommendations in 2008 to actively recommending early introduction of peanut between 4 and 11 months of age in high-risk infants in 2015. This qualitative study aims to explore pediatrician beliefs, practices, facilitators, and barriers regarding peanut introduction and testing. Methods: General pediatricians from academic, private, large group, and underserved practices in Northern California underwent individual semi-structured interviews in 2017. We asked about experiences surrounding infant peanut introduction, strategies for staying up-to-date with current recommendations, and barriers and facilitators to the new peanut introduction and testing recommendations. The data were coded, and using grounded theory methodology, a conceptual framework was developed around early peanut introduction and testing in infants. Results: Eighteen general pediatricians participated. We identified barriers that may contribute to pediatrician reluctance to recommending early peanut introduction or testing including lack of awareness, lack of agreement, lack of resources, and lack of outcome expectancy. A framework was created that suggests that pediatricians need to be knowledgeable about new recommendations, agree with the recommendations, have resources to carry out the counseling and testing, and have buy-in from the parents in order for successful uptake of peanut introduction guidelines. Conclusion: Recommending early peanut introduction or testing causes significant apprehension in some pediatricians, and there are many barriers to following recent early peanut introduction recommendations. A potential limitation of the study is that it was conducted right after the addendum guidelines were changed, leaving the possibility that attitudes and practices may have evolved since 2017. It is still likely that a multifaceted approach that addresses primary care provider guideline awareness, limited primary care resources for education and testing, and includes support and collaboration from subspecialty practices is more likely to lead to improved early peanut introduction uptake.

Implementation of a multidisciplinary discharge videoconference for children with medical complexity: a pilot study.

BACKGROUND: The hospital to home transition for children with medical complexity (CMC) poses many challenges, including suboptimal communication between the hospital and medical home. Our objective was to evaluate the implementation of a discharge videoconference incorporating the patient, caregiver, primary care provider (PCP), hospitalist physician, and case manager. METHODS: We evaluated implementation of this pilot intervention at a freestanding tertiary care children's hospital using mixed methods. A discharge videoconference was conducted for hospitalized children (< 18 years old) meeting complex chronic disease (C-CD) criteria. We collected field notes and conducted surveys and semi-structured interviews. Outcomes included adoption, cost, acceptability, feasibility, and appropriateness. Adoption, cost, and acceptability were analyzed using descriptive statistics. Acceptability, feasibility, and appropriateness were summarized using thematic content analysis. RESULTS: Adoption: A total of 4 CMC (9% of the 44 eligible children) had discharge videoconferences conducted. Cost (in provider time): On average, videoconferences took 5 min to schedule and lasted 21.5 min. Acceptability: All hospitalists involved (n = 4) were very likely to participate again. Interviews with caregivers (n = 4) and PCPs (n = 5) demonstrated that for those participating, videoconferences were acceptable and appropriate due to benefits including development of a shared understanding, remote physical assessment by the PCP, transparency, and humanization of the care handoff, and increased PCP comfort with care of CMC. Feasibility: Barriers included internet connection quality and scheduling constraints. CONCLUSIONS: This novel, visual approach to discharge communication for CMC had low adoption, possibly related to recruitment strategy. The videoconference posed low time burdens, and participating physicians and caregivers found them acceptable due to a variety of benefits. We identified several feasibility barriers that could be targeted in future implementation efforts.

Molecular epidemiological and serological studies of hantavirus infection in northern Vietnam.

The distribution of anti-hantavirus antibodies in humans and rodents in northern Vietnam was examined. In total, 837 serum samples from healthy humans (617) and patients with fever (220), living in six different areas were screened for IgG antibodies against Hantaan or Seoul virus (SEOV) by ELISA, IFA, and Western blot analysis. Antibody-positive sera were identified in 7/617 (1.1%) healthy donors, 5/150 port workers in the port of Hai Phong, and 2/185 residents of Ha Nam Province. In comparison, positive sera were detected in 5/220 (2.3%) fever patients in the provinces of Ha Nam (1/58) and Thanh Hoa (4/146). Antibody-positive Rattus norvegicus were found in the provinces of Ha Nam (7/52) and Thanh Hoa (1/67), in Haibatrung District (7/43) in Hanoi, and in Hai Phong Port (21/62), while antibody-positive R. rattus (2/17) were found in Hai Phong Port. Part of the Gc region from the viral genome was amplified by RT-PCR using lung tissue samples from R. norvegicus in Haibatrung (2/7) and Hai Phong Port (7/9), but not from R. rattus (0/2). Viral sequences were located in the SEOV clade and formed a single lineage with Indonesian SEOV, suggesting that Vietnamese SEOV is part of a distinct lineage among Asian SEOVs.

Seeking equilibrium: The experiences of parents of infants and toddlers who are deaf/hard-of-hearing.

PURPOSE: To identify key determinants of the quality of life of caregivers of infants and toddlers (< 3 years) who are deaf/hard-of-hearing (DHH). METHODS: We conducted focus groups with providers for children who are DHH as well as interviews with hearing parents of infants and toddlers who are DHH. A multi-step qualitative analysis on interview data using grounded theory was performed, and an iterative analysis to investigate codes to characterize specific topics in caring for deaf infants and toddlers was conducted. RESULTS: Four focus groups (n= 33) and six semi-structured interviews (n= 7) were conducted. The major theoretical code found was the "Search for Equilibrium" in parenting which arose from the three main categories of the caregiver role/experience: (1) being a parent - modifying parenting style as a result of their child's hearing loss, (2) being a mediator - modulating and filtering interactions between their child and their child's environment, and (3) being a navigator - managing the logistics of the medical and educational system. CONCLUSIONS: For hearing parents, the diagnosis of hearing loss requires changes in multiple domains of parenting. Support in each of these areas is critical for parents to restore a sense of equilibrium that is central to their quality of life. This framework provides a way to categorize parent experiences and may act as a template for focused interventions in the three identified domains.

Care Quality and Spending Among Commercially Insured Children With Disabilities.

OBJECTIVE: To identify opportunities to improve care value for children with disabilities (CWD), we examined CWD prevalence within a commercially insured population and compared outpatient care quality and annual health plan spending levels for CWD relative to children with complex medical conditions without disabilities; children with chronic conditions that are not complex; and children without disabling, complex, or chronic conditions. METHODS: This cross-sectional study comprised 1,118,081 person-years of Blue Cross Blue Shield Massachusetts data for beneficiaries aged 1 to 19years old during 2008 to 2012. We combined the newly developed and validated Children with Disabilities Algorithm with the Pediatric Medical Complexity Algorithm to identify CWD and non-CWD subgroups. We used 14 validated or National Quality Forum-endorsed measures to assess outpatient care quality and paid claims to examine annual plan spending levels and components. RESULTS: CWD constituted 4.5% of all enrollees. Care quality for CWD was between 11% and 59% for 8 of 14 quality measures and >80% for the 6 remaining measures and was generally comparable to that for non-CWD subgroups. Annual plan spending among CWD was a median and mean 23% and 53% higher than that for children with complex medical conditions without disabilities, respectively; CWD mean and median values were higher than for all other groups as well. CONCLUSIONS: CWD were prevalent in our commercially insured population. CWD experienced suboptimal levels of care, but those levels were comparable to non-CWD groups. Improving the care value for CWD involves a deeper understanding of what higher spending delivers and additional aspects of care quality.

Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood.

BACKGROUND: As an increasing number of patients with chronic conditions of childhood survive to adulthood, experts recommend that young adults with chronic conditions transfer from child-focused to adult-focused primary care. Little, however, is known about how comfortable physicians are caring for this population. OBJECTIVES: To assess the comfort of general internists and general pediatricians in treating young adult patients with chronic illnesses originating in childhood as well as the factors associated with comfort. PARTICIPANTS: In a random sample, 1288 of 2434 eligible US general internists and pediatricians completed a mailed survey (response rate = 53%). METHODS: We measured respondents' comfort level in providing primary care for a patient with sickle cell disease (SCD) or cystic fibrosis (CF). We also measured levels of disease familiarity, training and subspecialty support, as well as individual physician characteristics. RESULTS: Fifteen percent of general internists reported being comfortable as the primary care provider for adults with CF and 32% reported being comfortable providing primary care for adults with SCD, compared with 38% of pediatricians for CF (p < .001) and 35% for SCD (p > 0.05). Less than half of general internists felt that their specialty should take primary care responsibility for adult patients with CF and SCD. CONCLUSIONS: A majority of general internists and pediatricians are not comfortable providing primary care for young adults with chronic illnesses of childhood origin, such as CF and SCD. Efforts to increase treatment comfort among providers may help with the transition to adult-focused care for the growing numbers of young adults with complex chronic conditions.

Seroepidemiological study on hantavirus infections in India.

Hantaviruses are etiological agents of hemorrhagic fever with renal syndrome in many parts of Asia and Europe. There has been no documented case of hantavirus disease from India, although serological evidence exists. We investigated the prevalence of hantavirus in the Indian population and tried to identify potential risk groups for hantavirus infections. The presence of hantavirus-specific IgG antibodies was prospectively evaluated in 661 subjects belonging to different groups, i.e. patients with chronic renal disease, warehouse workers and tribal members engaged in rodent trapping. Healthy volunteer blood donors were included as a control group. Thirty-eight seropositive samples were found using a combination of a commercial ELISA followed by an indirect immunofluorescence assay. Western blot using recombinant Hantaan virus nucleocapsid antigen confirmed the presence of anti-hantavirus IgG in 28 (74%) of the 38 sera tested. This study confirms the presence of hantaviruses in India and warrants increasing awareness of the problems of emerging pathogens and the threats they may pose to the public health system.