Effectiveness of atropine in managing sialorrhea: A systematic review and meta-analysis.

OBJECTIVES: To describe the efficacy of atropine in controlling salivary flow in patients with sialorrhea or drooling. MATERIALS AND METHODS: We included randomized controlled studies, quasi-randomized trials, case reports, clinical trials, systematic reviews, and meta-analyses assessing the use of atropine in patients with sialorrhea or drooling. The endpoints were reduction in salivary flow rate, amount of saliva secreted, reduction in clinical symptoms of sialorrhea, death rattle intensity, or reduction in drooling intensity as measured by an objective scale such as the drooling intensity scale. RESULTS: A total of 56 studies with 2,378 patients were included in the systematic review. The underlying disease states included brain injury, amyotrophic lateral sclerosis, cerebral palsy, clozapine- and perphenazine-induced sialorrhea, Parkinson's disease, and terminal illness. The routes of atropine administration included sublingual, intravenous, subcutaneous, oral tablet or solution, and direct injection of atropine into parotid glands or at the base of the tongue. The generalized estimated equation regression models showed that sublingual administration is superior to oral and subcutaneous routes. CONCLUSION: Atropine is efficacious in managing sialorrhea in most disease states. Sublingual administration of atropine is superior to other routes of administration in reducing salivary flow in patients with sialorrhea.

Healthcare utilization in the first year after pediatric traumatic brain injury in an insured population.

OBJECTIVE: To compare the healthcare use by children with and without a traumatic brain injury (TBI) in the year following injury to understand whether children access primary care. PARTICIPANTS: Children 0 to 15 years with a TBI (N = 545) and (N = 2310) uninjured age and sex-matched comparisons. SETTING: A full benefits healthcare plan from 2000 to 2007. MAIN MEASURES: Mean annual healthcare utilization. RESULTS: Children with TBI had higher mean annual outpatient visits (4.2 vs. 3.5, P = .001), but similar mean annual general pediatric visits (2.7 vs. 2.8, P = .3) than comparison children. More cases than comparisons attended a general pediatric visit (80.0% vs. 73.3%, risk ratio = 1.1, 95% CI: 1.0-1.1). However, approximately 50% of children older than 7 years who had an intracranial injury did not attend a general pediatric visit and those were slightly more likely to receive specialty care (adjusted risk ratio = 1.1, 95% CI: 1.0-1.2). These children did not appear to be substituting specialty for primary care. CONCLUSIONS: Children with a full benefits insurance plan do not access primary care routinely after TBI. These findings present a challenge for designing a system to screen children after TBI.

Children With Medical Complexity: The 10-Year Experience of a Single Center.

Children with medical complexity (CMC) have chronic, multisystem health conditions, substantial health care needs, major functional limitations, and high resource use. They represent <1% of US children yet account for more than one-third of total pediatric health care costs. Health care systems designed for typical children do not meet the unique needs of CMC. In this special article, we describe the experience of our Comprehensive Care Program for CMC in a pediatric tertiary care center, from its launch in 2007 to its present model. We review the literature, describe our collective lessons learned, and offer suggestions for future directions.

Information needs for designing a home monitoring system for children with medical complexity.

Background Children with medical complexity (CMC) are a growing population of medically fragile children with unique healthcare needs, who have recurrent emergency department (ED) and hospital admissions due to frequent acute escalations of their chronic conditions. Mobile health (mHealth) tools have been suggested to support CMC home monitoring and prevent admissions. No mHealth tool has ever been developed for CMC and challenges exist. Objective To: 1) assess information needs for operationalizing CMC home monitoring, and 2) determine technology design functionalities needed for building a mHealth application for CMC. Methods Qualitative descriptive study conducted at a tertiary care children's hospital with a purposive sample of English-speaking caregivers of CMC. We conducted 3 focus group sessions, using semi-structured, open-ended questions. We assessed caregiver's perceptions of early symptoms that commonly precede acute escalations of their child conditions, and explored caregiver's preferences on the design functionalities of a novel mHealth tool to support home monitoring of CMC. We used content analysis to assess caregivers' experience concerning CMC symptoms, their responses, effects on caregivers, and functionalities of a home monitoring tool. Results Overall, 13 caregivers of CMC (ages 18 months to 19 years, mean = 9 years) participated. Caregivers identified key symptoms in their children that commonly presented 1-3 days prior to an ED visit or hospitalization, including low oxygen saturations, fevers, rapid heart rates, seizures, agitation, feeding intolerance, pain, and a general feeling of uneasiness about their child's condition. They believed a home monitoring system for tracking these symptoms would be beneficial, providing a way to identify early changes in their child's health that could prompt a timely and appropriate intervention. Caregivers also reported their own symptoms and stress related to caregiving activities, but opposed monitoring them. They suggested an mHealth tool for CMC to include the following functionalities: 1) symptom tracking, targeting commonly reported drivers (symptoms) of ED/hospital admissions; 2) user friendly (ease of data entry), using voice, radio buttons, and drop down menus; 3) a free-text field for reporting child's other symptoms and interventions attempted at home; 4) ability to directly access a health care provider (HCP) via text/email messaging, and to allow real-time sharing of child data to facilitate care, and 5) option to upload and post a photo or video of the child to allow a visual recall by the HCP. Conclusions Caregivers deemed a mHealth tool beneficial and offered a set of key functionalities to meet information needs for monitoring CMC's symptoms. Our future efforts will consist of creating a prototype of the mHealth tool and testing it for usability among CMC caregivers.

Hospitalist care of the medically complex child.

The nature of inpatient pediatrics is changing. Over the past decade, several factors have converged to influence the kinds of children currently being hospitalized. There has been a shift in the relative proportion of otherwise healthy children with acute illnesses being hospitalized to children with increasing medical complexity. This article focuses on hospitalist care of medically complex children and provides an overview on (1) the challenges in defining this population, (2) the unique issues surrounding their inpatient care (using a family-centered care approach that includes coordinated care, minimizing secondary complications, nutritional needs, functional limitations, transdisciplinary collaboration, and primary care issues), (3) technology devices commonly found, and (4) a proposal for a research agenda regarding medically complex children.

Parent perceptions of quality of life and healthcare satisfaction for children with medical complexity.

PURPOSE: To describe parent perceptions of their child's quality of life (QOL) and their satisfaction with health care for a group of children with medical complexity (CMC), and to determine whether parent perceptions of child well-being are associated with QOL and health care satisfaction. METHODS: Participants were parents or legal guardians of children enrolled in a novel program of intensive outpatient care for CMC. Participants completed 7-item questionnaires to ascertain their perceptions of their child's well-being, QOL and health care satisfaction. RESULTS: One hundred and ninety-one participants completed questionnaires (response rate 100%). 85% rated their child's QOL as excellent, very good, or good. 87% reported satisfaction with their child's health care. Fair or poor mental health was associated with fair or poor QOL (OR 1.09, p= 0.0002). More pain was associated with lower QOL (OR 1.07, p= 0.0022). Fewer days of play or school attendance were associated with lower satisfaction with health care (OR 1.09, p= 0.0003). CONCLUSION: Our study suggests that more pain and worse mental health are associated with parental perceptions of the quality of life for their CMC. Clinicians who care for these children and their families should carefully and repeatedly assess for these important symptoms.

Emergency department use among children with tracheostomies: Avoidable visits.

PURPOSE: To characterize high emergency department (ED) use by children with tracheostomies and complex chronic conditions, to distinguish avoidable from unavoidable ED visits, and to describe the financial impact of avoidable visits. METHODS: Children with tracheostomies in a pediatric tertiary care center with the highest ED utilization were identified via analysis of administrative data. Six experts in interdisciplinary dyads reviewed the records from all ED visits for these children, and distinguished avoidable from unavoidable visits. Hospital cost data for avoidable visits is described. RESULTS: Among 75 children with tracheostomies and complex chronic conditions, 23 (31%) were high ED utilizers. These 23 children accounted for 74% of all ED discharges the total group of 75 children from 2008 to 2011. Four of these 23 children with high utilization were excluded, leaving 19 subjects for review. These 19 children had 312 ED visits, of which 103 (33%) were deemed avoidable. Leading reasons for avoidable visits were uncomplicated upper respiratory infections, gastrointestinal infections, and enteral feeding system problems. Avoidable visits cost the hospital {$}67,940. CONCLUSIONS: One-third of ED visits by children with tracheostomies and complex chronic conditions may be avoidable. Increased ambulatory access to interdisciplinary teams of providers familiar with these children's unique needs might reduce avoidable ED visits and improve health outcomes. Further studies on how this model of ambulatory care might affect ED utilization and total healthcare costs are needed.

Differing perceptions regarding quality of life and inpatient treatment goals for children with severe disabilities.

OBJECTIVE: To describe and compare during an acute hospitalization the perceptions of parents, pediatric interns, and pediatric hospitalists regarding the long-term health-related quality of life (HRQoL) of children with severe disabilities when not hospitalized and to identify treatment goals. METHODS: Parents of children with severe disabilities aged 5 to 18 years, as well as the intern and hospitalist caring for the child during acute hospitalizations at a tertiary care center in Salt Lake City, Utah, participated in this study. All participants completed the KIDSCREEN-10 and an investigator-developed survey; a subset was interviewed to qualitatively ascertain perceptions of the child's HRQoL before the current acute illness. Responses were summarized with descriptive statistics and content analysis. RESULTS: We enrolled 115 subjects. Overall, parents rated the HRQoL of their children significantly higher than did either group of physicians on both the KIDSCREEN-10 (37.4 ± 3.9 vs 29.6 ± 5.5, P < .001) and the investigator-developed survey (30.3 ± 5.9 vs 26.3 ± 5.5, P < .001). Parents described the HRQoL of their children more positively and broadly than did physicians. Parents and physicians also expressed different goals for treatment. Parents expressed optimism despite uncertainty regarding their child's future, whereas physicians anticipated increased medical complications and focused on caregiver burden. CONCLUSIONS: Parents of children with severe disabilities rated their children's long-term HRQoL higher than physicians did. Such discrepancies may increase tensions and hinder shared decision-making efforts during acute hospitalizations. Explicit discussions between parents and physicians regarding the HRQoL of children with severe disabilities and treatment goals may facilitate care processes for everyone involved.

Addressing sexuality in youth with autism spectrum disorders: current pediatric practices and barriers.

OBJECTIVE: Research on adolescents and young adults with autism spectrum disorders (ASDs) has focused on promoting independence and optimizing quality of life, yet the areas of sexual development and sexuality has been largely neglected. The American Academy of Pediatrics encourages pediatricians to address sexuality issues in youth with disabilities to foster healthy development and minimize negative consequences. However, it is unclear to what extent pediatricians address sexuality issues in this population. METHODS: Two hundred three pediatricians who regularly care for youth with ASD completed an online survey about their experiences in providing sexuality-related care to families and youth with ASD. RESULTS: Respondents discussed an average of 10.9 of 26 sexuality topics with all families at least once during routine visits. Experience in caring for youth with ASD correlated positively with the number of sexuality-related topics discussed and with self-reported comfort discussing sexuality with parents of youth with ASD. The most common barriers to providing comprehensive sexuality-related care to youth with ASD included logistical barriers, pediatrician and parent discomfort, lack of training, and absence of information and materials to help pediatricians address sexuality in this population. CONCLUSIONS: Although most pediatricians acknowledged the importance of addressing sexuality-related issues with youth with ASD and their families, several important sexuality-related topics were rarely discussed due to a variety of perceived barriers. Implications and recommendations are discussed.

Motor delays: early identification and evaluation.

Pediatricians often encounter children with delays of motor development in their clinical practices. Earlier identification of motor delays allows for timely referral for developmental interventions as well as diagnostic evaluations and treatment planning. A multidisciplinary expert panel developed an algorithm for the surveillance and screening of children for motor delays within the medical home, offering guidance for the initial workup and referral of the child with possible delays in motor development. Highlights of this clinical report include suggestions for formal developmental screening at the 9-, 18-, 30-, and 48-month well-child visits; approaches to the neurologic examination, with emphasis on the assessment of muscle tone; and initial diagnostic approaches for medical home providers. Use of diagnostic tests to evaluate children with motor delays are described, including brain MRI for children with high muscle tone, and measuring serum creatine kinase concentration of those with decreased muscle tone. The importance of pursuing diagnostic tests while concurrently referring patients to early intervention programs is emphasized.

Parent and pediatrician perspectives regarding the primary care of children with autism spectrum disorders.

Parents of children with autism spectrum disorders (ASD) (n = 144) and primary care providers (PCPs) (n = 144) completed similar surveys assessing the ability of the PCP to address ASD-specific needs. Parents also rated their PCP's ability to deliver family-centered care. A majority of parents rated their PCP's ability as "not good" in addressing 14 of 17 ASD-specific needs, while a majority of PCPs rated themselves as "good" in addressing 10 of 17 areas. On 7 of 17 items, parents rated their PCPs lower than PCPs rated themselves. Parents who reported receiving family-centered care were more likely to rate the PCP's ability to meet ASD specific needs as "good". Both parents and PCPs identified areas for improvement in caring for children with ASD.

Home care of children and youth with complex health care needs and technology dependencies.

Children and youth with complex medical issues, especially those with technology dependencies, experience frequent and often lengthy hospitalizations. Hospital discharges for these children can be a complicated process that requires a deliberate, multistep approach. In addition to successful discharges to home, it is essential that pediatric providers develop and implement an interdisciplinary and coordinated plan of care that addresses the child's ongoing health care needs. The goal is to ensure that each child remains healthy, thrives, and obtains optimal medical home and developmental supports that promote ongoing care at home and minimize recurrent hospitalizations. This clinical report presents an approach to discharging the child with complex medical needs with technology dependencies from hospital to home and then continually addressing the needs of the child and family in the home environment.

Parent-provider-community partnerships: optimizing outcomes for children with disabilities.

Children with disabilities and their families have multifaceted medical, developmental, educational, and habilitative needs that are best addressed through strong partnerships among parents, providers, and communities. However, traditional health care systems are designed to address acute rather than chronic conditions. Children with disabilities require high-quality medical homes that provide care coordination and transitional care, and their families require social and financial supports. Integrated community systems of care that promote participation of all children are needed. The purpose of this clinical report is to explore the challenges of developing effective community-based systems of care and to offer suggestions to pediatricians and policy-makers regarding the development of partnerships among children with disabilities, their families, and health care and other providers to maximize health and well-being of these children and their families.

Providing a primary care medical home for children and youth with cerebral palsy.

All primary care providers will care for children with cerebral palsy in their practice. In addition to well-child and acute illness care, the role of the medical home in the management of these children includes diagnosis, planning for interventions, authorizing treatments, and follow-up. Optimizing health and well-being for children with cerebral palsy and their families entails family-centered care provided in the medical home; comanagement is the most common model. This report reviews the aspects of care specific to cerebral palsy that a medical home should provide beyond the routine health care needed by all children.

The medical home for children with autism spectrum disorders: parent and pediatrician perspectives.

This qualitative study examines differences between perceptions of parents and pediatricians regarding the needs of children with autism spectrum disorders (ASDs) and their families within the medical home. Two separate focus groups of parents of children with ASDs and pediatricians were conducted. Parents and pediatricians identify unmet needs within medical homes of children with ASDs. Parents perceived that physicians did not act early upon their concerns about development, and that care is less comprehensive, coordinated and family-centered than desired. Pediatricians desire to improve services but cite lack of time, training and resources as barriers. Medical homes for children with ASDs would benefit from better pediatrician ASD education and medical systems that support extended visits, care coordination and interdisciplinary collaboration.

Who will care for me next? Transitioning to adulthood with hydrocephalus.

OBJECTIVES: Hydrocephalus is a prototypical chronic condition that follows children into adulthood. The objectives of this study were to (1) review how the health care needs of young adults with hydrocephalus are not being met, (2) estimate the numbers of adults with childhood-onset hydrocephalus, (3) describe a novel program to provide care for young adults with hydrocephalus and other chronic pediatric conditions, and (4) propose national strategies to promote successful hydrocephalus transition care. RESULTS: Adults with hydrocephalus need continuous access to expert surgical and medical providers. Existing care models fail to meet this need. The number of young adults who have hydrocephalus, are aged 18 to 35 and need treatment in the United States is predicted to exceed 40000 annually within the next 2 decades. We are developing integrated teams of pediatric and adult medical and surgical specialists to provide continuous, coordinated, comprehensive care for individuals with hydrocephalus in a pediatric setting. This setting will train our future physician workforce on optimal transition care. Coordinated national efforts are also needed. CONCLUSIONS: Providers need to implement appropriate management and transition care for individuals with hydrocephalus. We must work at local and national levels to transform the care model, improve the quality of health care delivery, and improve outcomes for young adults with hydrocephalus.

Promoting the participation of children with disabilities in sports, recreation, and physical activities.

The benefits of physical activity are universal for all children, including those with disabilities. The participation of children with disabilities in sports and recreational activities promotes inclusion, minimizes deconditioning, optimizes physical functioning, and enhances overall well-being. Despite these benefits, children with disabilities are more restricted in their participation, have lower levels of fitness, and have higher levels of obesity than their peers without disabilities. Pediatricians and parents may overestimate the risks or overlook the benefits of physical activity in children with disabilities. Well-informed decisions regarding each child's participation must consider overall health status, individual activity preferences, safety precautions, and availability of appropriate programs and equipment. Health supervision visits afford pediatricians, children with disabilities, and parents opportunities to collaboratively generate goal-directed activity "prescriptions." Child, family, financial, and societal barriers to participation need to be directly identified and addressed in the context of local, state, and federal laws. The goal is inclusion for all children with disabilities in appropriate activities. This clinical report discusses the importance of physical activity, recreation, and sports participation for children with disabilities and offers practical suggestions to pediatric health care professionals for the promotion of participation.

Children with chronic complex medical illnesses: Is inpatient care family-centered?

BACKGROUND: Families of children with complex chronic medical illnesses (CCMI) benefit from coordinated, family-centered healthcare. OBJECTIVE: Compare parental perceptions of inpatient family-centered care for children with CCMI in structured clinical programs (SCPs) with those who are not in SCPs. DESIGN/METHODS: Cross-sectional mail survey of parents of children with CCMIs using the 56-item Measure of Processes of Care (MPOC) to rate perceptions of family-centered healthcare. We compared responses of SCP to non-SCP children. RESULTS: 215 (36.6%) of 588 surveys were returned. Response rates were 40.0% for SCP and 33.8% for non-SCP children. The proportion of favorable (6-7) ratings was higher for the SCP group than for the non-SCP group (52.4% vs. 48.3%, p < 0.035). The proportion of unfavorable ratings was also different (5.4% vs. 12.3%, p =< 0.001). SCP families felt care was directed at the whole child and consistent. Non-SCP families reported more unmet needs and less recognition of their role. CONCLUSIONS: Parents of children with CCMI perceive inpatient care as more family-centered when provided in conjunction with a SCP. Children receiving non-SCP care may benefit from inclusion in SCPs dedicated to their needs. Further studies to determine the best way to provide this care are needed.