From Hospital to Home: Referrals to Pediatric Hospice and Home-based Palliative Care.

CONTEXT: Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices. OBJECTIVES: To describe community-based program referrals from a PPC team, identifying factors associated with referral type, and potential misalignment between patient needs and referral received. METHODS: Chart abstraction of patients seen in 2017 by the PPC team of a large, urban children's hospital, followed for at least 6 months or until death, including clinical and demographic characteristics, and referrals to hospice and HBPC. RESULTS: Of the 302 study-eligible patients, 25% died during the hospitalization of the first 2017 visit.  Of the remaining 228 patients, 42 (18.4%) were referred to HBPC and 58 (25.4%) to hospice. Excluding patients referred to hospice care, only one-third with demographic eligibility were referred to HBPC; those seen in the ICU were least likely to be referred.  Over half of the 58 patients referred to hospice died within the study period (n = 34, 58.6%); descendants were more likely to have cancer (P = 0.002) and less likely to have a neurologic (P = 0.021) diagnosis. CONCLUSION: Despite demographic eligibility, a minority of patients seen by a hospital-based PPC team received referrals for hospice or HBPC.  Children discharged from an ICU and those with neurologic conditions may be at higher risk of missing referrals best aligned with their needs.  Future research should identify and address causes of referral misalignment. Advocacy for programs adaptable to patients' changing needs may also be needed.

Compassionate extubation protocol to improve team communication and support in the neonatal intensive care unit.

OBJECTIVE: Compassionate extubation (CE) can be stressful for staff and families in the neonatal intensive care unit (NICU). Our quality improvement initiative developed and implemented a novel symptom management and family support checklist and post-debriefing template to improve team communication and staff support. STUDY DESIGN: An interprofessional team performed a needs assessment, determined key drivers and intervention steps, and implemented changes using Plan-Do-Study-Act cycles. Outcomes included nursing perception of good communication with the medical team, nursing assessment of patient comfort after CE, and frequency of post-event debrief. Outcomes were analyzed using time series design with 12 months baseline data and 6 months post-implementation monitoring. RESULT: Eighteen events were studied. Respondents endorsing "good" communication with the medical team increased by 60%, and debrief participation rate improved by 96%. CONCLUSION: Implementation of a CE checklist and post-event debriefing sheet was associated with increased rate of debriefs and improved team communication.

The Use of Telemedicine for Home-Based Palliative Care for Children With Serious Illness: A Scoping Review.

CONTEXT: There is potential value to home-based palliative care for children with serious illness delivered via telemedicine (TM HBPC). Evidence to guide optimal design and delivery of TM HBPC is urgently needed. OBJECTIVES: To explore the existing literature to identify research on pediatric TM HBPC. METHODS: Systematic scoping review conducted following preferred reporting items for systematic reviews and meta-analysis for scoping reviews guidelines. PubMed, Embase, Cochrane CENTRAL, CINAHL, Web of Science, PsycINFO, and ERIC were searched (January-April 2020) using keywords and controlled vocabulary. The Reach, Effectiveness, Adoption, Implementation, Maintenance framework was used to identify components in the literature that facilitate or limit dissemination of TM HBPC interventions. RESULTS: Seventeen articles were included. Most of the literature comprised small descriptive studies, such as case reports, and feasibility trials. Many studies focused on acceptability, and the TM HBPC model was generally acceptable to both clinicians and families. Few studies measured patient access to care, patient, and family centered health or quality of life outcomes. While included studies addressed multiple criteria for each of the Reach, Effectiveness, Adoption, Implementation, Maintenance dimensions, much of the information was qualitative and subjective. CONCLUSION: TM HBPC is a promising strategy to increase access to palliative care for children with serious illness. However, the current review found a need for more robust information describing implementation and effectiveness of TM HBPC models, adaptation across care settings, and maintenance over time to guide and facilitate broader dissemination.

Lessons Learned: Identifying Items Felt To Be Critical to Leading a Pediatric Palliative Care Program in the Current Era of Program Development.

Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team resilience, moral injury, and burnout. These challenges have stretched new directors' leadership skills, yet, guidance in the literature on identifying and managing these challenges is limited. Methods: A convenience sample of 15 PPCP directors who assumed their duties within the last 10 years were first asked the following open-ended question: What do you wish you had known before starting or taking over leadership of a PPCP? Responses were grouped into themes based on similarity of content. Participants then ranked these themes based on importance, and an online discussion further elucidated the top ten themes. Results: Thirteen directors responded (86.7%; 69% female). The median age of their current-state PPCP was 5.1 years (range: 0.3-9.3), and the median number of covered pediatric-specific hospital beds was 283 (range: 170-630). Their responses generated 51 distinct items, grouped into 17 themes. Themes ranked as most important included "Learn how to manage, not just lead," "Negotiate everything before you sign anything," and "Balance patient volume with scope of practice." Conclusion: These themes regarding challenges and opportunities PPCP directors encountered in the current era of program growth can be used as a guide for program development, a self-assessment tool for program directors, a needs-assessment for program leadership, and a blueprint for educational offerings for PPCP directors.

A Health Care Transition Curriculum for Primary Care Residents: Identifying Goals and Objectives.

BACKGROUND AND OBJECTIVES: The transition from pediatric to adult health care is a vulnerable period for youth with special health care needs. Although successful transitions are recognized as critical for improving adult outcomes and reducing health care utilization and cost, an educational gap in health care transitions for physicians persists. Our aim with this project was to develop a national health care transition residency curriculum for primary care physicians, using an expert-based, consensus-building process. METHODS: Medical professionals with expertise in health care transition were recruited to participate in a survey to assist in the development of a health care transition curriculum for primary care physicians. By using a modified Delphi process, curricular goals and objectives were drafted, and participants rated the importance of each objective, feasibility of developing activities for objectives, and appropriateness of objectives for specified learners. Mean and SDs for each response and percent rating for the appropriateness of each objective were calculated. RESULTS: Fifty-six of 246 possible respondents participated in round 1 of ratings and 36 (64%) participated in the second round. Five goals with 32 associated objectives were identified. Twenty-five of the 32 objectives (78%) were rated as being appropriate for "proficient" learners, with 7 objectives rated as "expert." Three objectives were added to map onto the Got Transition guidelines. CONCLUSIONS: The identified goals and objectives provide the foundation and structure for future curriculum development, facilitating the sharing of curricular activities and evaluation tools across programs by faculty with a range of expertise.

Transitioning from General Pediatric to Adult-Oriented Inpatient Care: National Survey of US Children's Hospitals.

BACKGROUND: Hospital charges and lengths of stay may be greater when adults with chronic conditions are admitted to children's hospitals. Despite multiple efforts to improve pediatric-adult healthcare transitions, little guidance exists for transitioning inpatient care. OBJECTIVE: This study sought to characterize pediatricadult inpatient care transitions across general pediatric services at US children's hospitals. DESIGN, SETTING AND PARTICIPANTS: National survey of inpatient general pediatric service leaders at US children's hospitals from January 2016 to July 2016. MEASUREMENTS: Questionnaires assessed institutional characteristics, presence of inpatient transition initiatives (having specific process and/or leader), and 22 inpatient transition activities. Scales of highly correlated activities were created using exploratory factor analysis. Logistic regression identified associations between institutional characteristics, transition activities, and presence of an inpatient transition initiative. RESULTS: Ninety-six of 195 children's hospitals responded (49.2% response rate). Transition initiatives were present at 38% of children's hospitals, more often when there were dual-trained internal medicine-pediatrics providers or outpatient transition processes. Specific activities were infrequent and varied widely from 2.1% (systems to track youth in transition) to 40.5% (addressing potential insurance problems). Institutions with initiatives more often consistently performed the majority of activities, including using checklists and creating patient-centered transition care plans. Of remaining activities, half involved transition planning, the essential step between readiness and transfer. CONCLUSIONS: Relatively few inpatient general pediatric services at US children's hospitals have leaders or dedicated processes to shepherd transitions to adultoriented inpatient care. Across institutions, there is a wide variability in performance of activities to facilitate this transition. Feasible process and outcome measures are needed.

Change in health status and access to care in young adults with special health care needs: results from the 2007 national survey of adult transition and health.

BACKGROUND: Despite over 500,000 adolescents with special health care needs transitioning to adulthood each year, limited information is available on their health status or their access to care after transition. OBJECTIVE: To describe the change in health status and access to care of a nationally sampled, longitudinal cohort of young adults with special health care needs (ASHCN). METHODS: We analyzed follow-up data collected in the 2007 Survey of Adult Transition and Health on young adults who were 14-17 years of age when their parents participated in the 2001 National Survey of Children with Special Health Care Needs. We describe changes in access to care and health status over time, and used logistic regression to identify characteristics that were associated with declining health status in this cohort. RESULTS: 1,865 participants, aged 19-23 years, completed the Survey of Adult Transition and Health. Between 2001 and 2007, there was a 3.6 fold increase in the proportion experiencing delayed or forgone care; 10% reported a decline in health status. There was a 7.7-fold increase in the proportion reporting no insurance. In regression analysis, factors associated with declining health status between 2001 and 2007 included underlying disease severity and delayed or forgone care in young adulthood. CONCLUSIONS: We found significant deterioration in insurance coverage, usual source of care and receiving timely health care as ASHCN aged into adulthood, and that this was associated with decline in health status. Our findings suggest that further population-based analyses of health outcomes are needed to plan for interventions to assist this vulnerable population.

Current status of transition preparation among youth with special needs in the United States.

OBJECTIVE: To examine current US performance on transition from pediatric to adult health care and discuss strategies for improvement. METHODS: The 2009-2010 National Survey of Children with Special Health Care Needs is a nationally representative sample with 17 114 parent respondents who have youth with special health care needs (YSHCN) ages 12 and 18. They are asked about transition to an adult provider, changing health care needs, increasing responsibility for health care needs, and maintaining insurance coverage. We analyzed the association of selected characteristics with successful transition preparation. RESULTS: Overall, 40% of YSHCN meet the national transition core outcome. Several factors are associated with transition preparation, including female gender; younger age; white race; non-Hispanic ethnicity; income ≥400% of poverty; little or no impact of condition on activities; having a condition other than an emotional, behavioral, or developmental condition; having a medical home; and being privately insured. CONCLUSIONS: Most YSHCN are not receiving needed transition preparation. Although most providers are encouraging YSHCN to assume responsibility for their own health, far fewer are discussing transfer to an adult provider and insurance continuity. Although changes in sample design limit trend analysis, there have been no discernible improvements since this transition outcome was measured in the 2005-2006 National Survey of Children with Special Health Care Needs. The 2011 release of the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians clinical recommendations on transition, new transition tools, and the spread of medical home should stimulate future improvements in transition performance.

Transition from pediatric to adult care for youth diagnosed with type 1 diabetes in adolescence.

OBJECTIVE: Youth with type 1 diabetes mellitus are at risk for poor glycemic control as they age into adulthood. The aim of this study was to describe sociodemographic and clinical correlates of poor glycemic control associated with the transfer of care from pediatric to adult diabetes providers among a cohort of youth with type 1 diabetes diagnosed in adolescence. METHODS: Analyses included 185 adolescent participants with recently diagnosed type 1 diabetes in the SEARCH for Diabetes in Youth Study with pediatric care at baseline who were age ≥18 years at follow-up. Demographic and clinical factors were measured by survey and laboratory results. Survival analysis was used to estimate the age of transition. Logistic regression analysis assessed the association of demographic and clinical factors with the transition of care and poor glycemic control at follow-up. RESULTS: Fifty-seven percent of participants had transitioned to adult diabetes care providers by the follow-up visit. The estimated median age of transition of care was 20.1 years (95% confidence interval 19.8-20.4). Older age, lower baseline glycosylated hemoglobin, and less parental education were independently associated with increased odds of transition. The odds of poor glycemic control at follow-up were 2.5 times higher for participants who transitioned to adult care compared with those who remained in pediatric care. CONCLUSIONS: Transferring from pediatric to adult care, experienced by more than half the sample, was associated with an increased risk of poor glycemic control at follow-up. These findings suggest that young adults need additional support when moving to adult care.

The transition to adult health care for youth with special health care needs: do racial and ethnic disparities exist?

Although the transition to adulthood for youth with special health care needs (YSHCN) has been gathering attention, the impact of racial and ethnic disparities on this process has been relatively unexamined. In this review, we explore evidence of disparities in the transition to adulthood for YSHCN, which is important because the problems that YSHCN face in transitioning to adulthood are, in large part, caused by interrupted access to high-quality health care and minority YSHCN and adults have many well-described gaps in access to quality care. Understanding the disparities in the transition process is essential to ensure that interventions designed to improve this transition will meet the needs of this high-risk population. We reviewed research on transition preparation and outcomes for YSHCN to find evidence of racial and ethnic disparities. The results of our review indicate that few YSHCN are receiving adequate transition preparation, and some evidence indicates that this situation is worse for racial and ethnic minorities. Furthermore, young adults, including YSHCN, have poorer access to care than children. Moreover, at some ages, this age-related decline in access is worse for Hispanic and black young adults than for others. Finally, low-income YSHCN are at higher risk than other YSHCN of experiencing gaps in access to care as they age into adulthood. Possible causes of racial and ethnic disparities in health care transitions are related to insurance, living in low-income communities, and sociocultural factors. Significant efforts in research, policy change, advocacy, and education of providers and families are needed to ensure optimal transition preparation and adult outcomes for YSHCN from all racial and ethnic backgrounds.

Planning for health care transitions: results from the 2005-2006 National Survey of Children With Special Health Care Needs.

OBJECTIVES: Many youth with special health care needs have difficulties transferring to adult medical care. To address this, the Maternal and Child Health Bureau has made receipt of transition services a core performance outcome for community-based systems of care for youth with special health care needs. In this article we describe the results for the transition core outcome from the 2005-2006 National Survey of Children With Special Health Care Needs. We also describe changes in the measurement strategy for this outcome since the first National Survey of Children With Special Health Care Needs in 2001. METHODS: In the nationally representative, cross-sectional 2005-2006 National Survey of Children With Special Health Care Needs, parent or guardian respondents of 18198 youth with special health care needs (aged 12-17) were asked if they have had discussions with their child's health care providers about (1) future adult providers, (2) future adult health care needs, (3) changes in health insurance, and (4) encouraging their child to take responsibility for his or her care. All 4 components had to be met for the youth to meet the overall transition core outcome. Those who had not had transition discussions reported if such discussions would have been helpful. RESULTS: Overall, 41% of youth with special health care needs met the core performance outcome for transition. Forty-two percent had discussed shifting care to an adult provider, 62% discussed their child's adult health care needs, and 34% discussed upcoming changes in health insurance. Most (78%) respondents said that providers usually or always encourage their child to take responsibility for his or her health. Non-Hispanic black or Hispanic race/ethnicity, lower income level, not speaking English, and not having a medical home reduced the odds of meeting the transition core outcome. CONCLUSIONS: Current performance on the transition core outcome leaves much room for improvement. Many parents feel that having transition-related discussions with their health care providers would be helpful. Future clinical and policy-level research should be directed at identifying barriers to, and recommending content for, health transition discussions.

Pediatricians' roles in the provision of developmental services: an international study.

OBJECTIVE: To understand how early childhood developmental services are provided in other countries in comparison with the United States. BACKGROUND: Recent surveys document gaps in developmental services provided in the United States. Understanding pediatrician roles in other industrialized countries may shed light on how to meet emerging professional expectations around health promotion care and developmental services. DESIGN: : Using a typology of preventive and health promotion care, we conducted structured interviews and case vignettes to examine the roles of health professionals in (1) developmental assessment, (2) anticipatory guidance/health promotion, (3) problem-focused counseling, and (4) coordination of service needs. Participants included 20 child health experts and key informants in 10 countries. Roles and systems of providers of care were categorized into several organizational approaches based on these results. RESULTS: Pediatricians provide the continuum of primary care developmental services in only a few countries. In contrast to the United States, most of the studied countries have complementary roles for pediatricians and other nonphysician clinicians in preventive care. In many countries, nurses or general practice physicians provide most basic preventive care whereas pediatricians provide more specialized care for developmental/behavioral problems and chronic medical conditions. CONCLUSIONS: Recent studies that have documented the poor quality of early childhood health care are pressuring the US pediatric profession to meet increasing expectations in developmental services. Although US pediatricians struggle to incorporate recommendations into their daily practice, most other countries place responsibility for some preventive developmental services with community-based nurses or general practice physicians.

How can we strengthen the evidence base in public health preparedness?

The lack of frequent real-world opportunities to study preparedness for large-scale public health emergencies has hindered the development of an evidence base to support best practices, performance measures, standards, and other tools needed to assess and improve the nation's multibillion dollar investment in public health preparedness. In this article, we argue that initial funding priorities for public health systems research on preparedness should focus on using engineering-style methods to identify core preparedness processes, developing novel data sources and measures based on smaller-scale proxy events, and developing performance improvement approaches to support the translation of research into practice within the wide variety of public health systems found in the nation.

Access to care for youth with special health care needs in the transition to adulthood.

PURPOSE: To describe access to care and identify factors associated with access for low-income young adults who aged out of a public program for children with special health care needs (CSHCN). METHODS: This was a cross-sectional survey of graduates of the Title V CSHCN program in one California county. Subjects were 77 graduates (55% female) aged 21-24 years with ongoing health care needs. Measures of access to care included having the following: a regular source of care for the main health condition; all needed care since turning 21 years of age; any delayed or forgone care in the past 6 months; health insurance; and continual insurance since turning age 21. Individuals lacking any one access measure were defined as experiencing an adverse transition event. RESULTS: Of the subjects, 24% lacked a usual source of health care, 27% had gone without some needed health care since turning 21, and 39% had delayed needed care. Although 10% of respondents were uninsured at the time of the survey; 40% had a gap in insurance coverage since turning age 21. Overall, 65% reported at least one adverse transition event affecting access to care. Factors associated with experiencing no adverse transition event were receiving Supplemental Security Income (SSI, p = .007), having received special education services (p = .003), and having been born with the main health condition (p = .013). CONCLUSIONS: Insurance gaps and delayed care are prevalent among these low-income young adults despite ongoing health problems. Greater transition support might improve access by linking them with a usual source of care, identifying insurance options, and encouraging regular use of care.

Using quality improvement methods to improve public health emergency preparedness: PREPARE for Pandemic Influenza.

Many public health departments seek to improve their capability to respond to large-scale events such as an influenza pandemic. Quality improvement (QI), a structured approach to improving performance, has not been widely applied in public health. We developed and tested a pilot QI collaborative to explore whether QI could help public health departments improve their pandemic preparedness. We demonstrated that this is a promising model for improving public health preparedness and may be useful for improving public health performance overall. Further efforts are needed, however, to encourage the robust implementation of QI in public health.

Quality improvement in public health emergency preparedness.

Quality improvement (QI) methods have been used in many industries to improve performance and outcomes. This chapter reviews key QI concepts and their application to public health emergency preparedness (PHEP). We conclude that for QI to flourish and become standard practice, changes to the status quo are necessary. In particular, public health should build its capabilities in QI, enhance implementation, and align incentives to facilitate use of QI.

Rethinking well-child care in the United States: an international comparison.

BACKGROUND: The increasing scope of health supervision recommendations challenges well-child care delivery in the United States. Comparison of the United States with other countries' delivery systems may highlight different assumptions as well as structural approaches for consideration. OBJECTIVE: Our goal was to describe the process of well-child care delivery in industrialized nations and compare it to the US model of child health care. METHODS: Literature reviews and international experts were used to identify 10 countries with unique features of well-child care delivery for comparison to the United States. Key-informant interviews using a structured protocol were held with child health experts in 10 countries to delineate the structural and practice features of their systems. Site visits produced additional key informant data from 5 countries (The Netherlands, England, Australia, Sweden, and France). RESULTS: A primary care framework was adapted to analyze structural and practice features of well-child care in the 10 countries. Although well-child care content is similar, there are marked differences in the definitions of well-child care and the scope of practice of primary care professionals and pediatricians specifically who provide this care across the 10 countries. In contrast to the United States, none of the countries place all well-child care components under the responsibility of a single primary care provider. Well-child care services and care for acute, chronic, and behavioral/developmental problems are often provided by different clinicians and within different service systems. CONCLUSIONS: Despite some similarities, well-child care models from other countries differ from the United States in key structural features on the basis of broad financing differences as well as specific visions for effective well-child care services. Features of these models can inform child health policy makers and providers in rethinking how desired improvements in US well-child care delivery might be sought.

Using health-related quality of life to predict and manage pediatric healthcare.

Increasing healthcare costs and the prevalence of managed care make population health management an imperative. Health-related quality of life (HRQOL) is a multidimensional construct that includes both physical and psychosocial (i.e., social, emotional and role) dimensions. Early studies suggest that HRQOL can predict costs of care for pediatric populations. A key issue is how to manage the care of those identified as high need. Here again, HRQOL measurement can be useful. HRQOL measurement in the clinical setting can streamline and structure the clinical interview, potentially leading to enhanced assessment. It can also make it easier for busy pediatricians to explore and address issues of psychosocial functioning. A particularly promising area for HRQOL is in identifying, proactively, suitable candidates for case management in large enrolled populations. Further research should extend the initial studies on HRQOL predicting utilization and cost, more thoroughly specify the proportion of identified costs that are manageable and care management's effect on care for different groups of children, document the causal links between physiologic variables and HRQOL on one hand and patient functioning on the other, and understand the conditions necessary for HRQOL assessment to affect clinical practice.