Caregiving and Confidence to Avoid Hospitalization for Children with Medical Complexity.

OBJECTIVE: To test associations between parent-reported confidence to avoid hospitalization and caregiving strain, activation, and health-related quality of life (HRQOL). STUDY DESIGN: In this prospective cohort study, enrolled parents of children with medical complexity (n = 75) from 3 complex care programs received text messages (at random times every 2 weeks for 3 months) asking them to rate their confidence to avoid hospitalization in the next month. Low confidence, as measured on a 10-point Likert scale (1 = not confident; 10 = fully confident), was defined as a mean rating <5. Caregiving measures included the Caregiver Strain Questionnaire, Family Caregiver Activation in Transition (FCAT), and caregiver HRQOL (Medical Outcomes Study Short Form 12 [SF12]). Relationships between caregiving and confidence were assessed with a hierarchical logistic regression and classification and regression trees (CART) model. RESULTS: The parents were mostly mothers (77%) and were linguistically diverse (20% spoke Spanish as their primary language), and 18% had low confidence on average. Demographic and clinical variables had weaker associations with confidence. In regression models, low confidence was associated with higher caregiver strain (aOR, 3.52; 95% CI, 1.45-8.54). Better mental HRQOL was associated with lower likelihood of low confidence (aOR, 0.89; 95% CI, 0.80-0.97). In the CART model, higher strain similarly identified parents with lower confidence. In all models, low confidence was not associated with caregiver activation (FCAT) or physical HRQOL (SF12) scores. CONCLUSIONS: Parents of children with medical complexity with high strain and low mental HRQOL had low confidence in the range in which intervention to avoid hospitalization would be warranted. Future work could determine how adaptive interventions to improve confidence and prevent hospitalizations should account for strain and low mental HRQOL.

In-Home COVID-19 Testing for Children With Medical Complexity: Feasibility and Association With School Attendance and Safety Perceptions.

The REstarting Safe Education and Testing program for children with medical complexity was implemented in May 2021 at the University of Wisconsin to evaluate the feasibility of in-home rapid antigen COVID-19 testing among neurocognitively affected children. Parents or guardians administered BinaxNOW rapid antigen self-tests twice weekly for three months and changed to symptom and exposure testing or continued surveillance. In-home testing was feasible: nearly all (92.5%) expected tests were conducted. Symptomatic testing identified seven of nine COVID-19 cases. School safety perceptions were higher among those opting for symptom testing. Clinical Trials.gov identifier: NCT04895085. (Am J Public Health. 2022;112(S9):S878-S882. https://doi.org/10.2105/AJPH.2022.306971).

Caregiver perceptions of in-home COVID-19 testing for children with medical complexity: a qualitative study.

BACKGROUND: In-home direct antigen rapid testing (DART) plays a major role in COVID-19 mitigation and policy. However, perceptions of DART within high-risk, intellectually impaired child populations are unknown. This lack of research could negatively influence DART uptake and utility among those who stand to benefit most from DART. The purpose of this study was to describe caregivers' perceptions of an in-home COVID-19 DART regimen in children with medical complexity, including the benefits and limitations of DART use. METHODS: This qualitative study was a subproject of the NIH Rapid Acceleration of Diagnostics Underserved Populations research program at the University of Wisconsin. We combined survey data and the thematic analysis of semi-structured interview data to understand caregivers' perceptions of in-home COVID-19 testing and motivators to perform testing. Caregivers of children with medical complexity were recruited from the Pediatric Complex Care Program at the University of Wisconsin (PCCP). Data were collected between May and August 2021. RESULTS: Among n = 20 caregivers, 16/20 (80%) of their children had neurologic conditions and 12/20 (60%) used home oxygen. Survey data revealed that the largest caregiver motivators to test their child were to get early treatment if positive (18/20 [90%] of respondents agreed) and to let the child's school know if the child was safe to attend (17/20 [85%] agreed). Demotivators to testing included that the child could still get COVID-19 later (7/20 [35%] agreed), and the need for officials to reach out to close contacts (6/20 [30%] agreed). From interview data, four overarching themes described perceptions of in-home COVID-19 testing: Caregivers perceived DART on a spectrum of 1) benign to traumatic and 2) simple to complex. Caregivers varied in the 3) extent to which DART contributed to their peace of mind and 4) implications of test results for their child. CONCLUSIONS: Although participants often described DART as easy to administer and contributing to peace of mind, they also faced critical challenges and limitations using DART. Future research should investigate how to minimize the complexity of DART within high-risk populations, while leveraging DART to facilitate safe school attendance for children with medical complexity and reduce caregiver burden.

Linking Parent Confidence and Hospitalization through Mobile Health: A Multisite Pilot Study.

OBJECTIVE: To evaluate the associations between parent confidence in avoiding hospitalization and subsequent hospitalization in children with medical complexity (CMC); and feasibility/acceptability of a texting platform, Assessing Confidence at Times of Increased Vulnerability (ACTIV), to collect repeated measures of parent confidence. STUDY DESIGN: This prospective cohort study purposively sampled parent-child dyads (n = 75) in 1 of 3 complex care programs for demographic diversity to pilot test ACTIV for 3 months. At random days/times every 2 weeks, parents received text messages asking them to rate confidence in their child avoiding hospitalization in the next month, from 1 (not confident) to 10 (fully confident). Unadjusted and adjusted generalized estimating equations with repeated measures evaluated associations between confidence and hospitalization in the next 14 days. Post-study questionnaires and focus groups assessed ACTIV's feasibility/acceptability. RESULTS: Parents were 77.3% mothers and 20% Spanish-speaking. Texting response rate was 95.6%. Eighteen hospitalizations occurred within 14 days after texting, median (IQR) 8 (2-10) days. When confidence was <5 vs ≥5, adjusted odds (95% CI) of hospitalization within 2 weeks were 4.02 (1.20-13.51) times greater. Almost all (96.8%) reported no burden texting, one-third desired more frequent texts, and 93.7% were very likely to continue texting. Focus groups explored the meaning of responses and suggested ACTIV improvements. CONCLUSIONS: In this demographically diverse multicenter pilot, low parent confidence predicted impending CMC hospitalization. Text messaging was feasible and acceptable. Future work will test efficacy of real-time interventions triggered by parent-reported low confidence.

Hospitalizations for Ambulatory Care-Sensitive Conditions among Children with Chronic and Complex Diseases.

OBJECTIVE: To evaluate ambulatory-care sensitive (ACS) hospitalizations for children with noncomplex chronic diseases (NC-CD) and children with medical complexity (CMC), and identify associations with ambulatory care characteristics. Although ACS hospitalizations are potentially preventable in general populations, the specific ambulatory care predictors and influence of medical complexity on them is poorly understood. STUDY DESIGN: Retrospective cohort study of NC-CD and CMC hospitalizations at a children's hospital during 2007-2014, excluding labor/delivery and children over 21 years. Pediatric medical complexity algorithm identified NC-CD or CMC. ACS hospitalizations were identified using Agency for Healthcare Research and Quality indicator definitions. Demographic and ambulatory care characteristics were compared between ACS and non-ACS hospitalizations with logistic regression clustered by patient. Measures of ambulatory care during 2 years before admission were explored with 20% random sample of general pediatrics discharges. RESULTS: Among 4035 children with NC-CD, 14.6% of 4926 hospitalizations were ACS hospitalizations. Among 5084 CMC, 5.3% of 14 390 discharges were ACS hospitalizations. Among NC-CD discharges, ACS hospitalizations were more likely with no prior-year outpatient visits (OR 1.4, 95% CI 1.1-1.7) and less likely with timely well checks (OR 0.8, 95% CI 0.6-0.9) and phone encounters in the month before admission (OR 0.5, 95% CI 0.2-1.0). Among CMC discharges, the only association observed was with provider continuity (OR 0.3, 95% CI 0.1- 1.0). CONCLUSIONS: Provider continuity may be associated with fewer CMC ACS hospitalizations, however, measures of ambulatory care were more consistently associated with ACS hospitalizations for NC-CD. CMC may need more precise ACS hospitalization definitions.

Long-Acting but Reversible: Opportunities to Address Provider Bias in Contraceptive Care.

Jasmine is an 18-year-old Black female bringing her infant to the pediatrician for a newborn weight check. She asks her pediatrician's opinion about hormonal contraceptive injections, sharing that they were strongly recommended after she gave birth. The recommending health care provider told her, "We don't want you to end up back here any time soon." Rosita, a 16-year-old Latina female, visits her pediatrician for a well check. She reports a history of vaginal sex with 2 male partners and agrees to have a hormonal subcutaneous implant placed to avoid pregnancy. After 4 months of bothersome spotting, Rosita returns to have the implant removed. Rosita's provider strongly counsels against removal. Jasmine and Rosita are members of populations that have been systematically marginalized throughout American history. Their stories are derived from real cases and reveal how structural racism impacts modern contraceptive care. Specifically, their cases are examples of statistical discrimination, wherein the tendency to disproportionately recommend long-acting reversible contraception to historically marginalized communities does not follow the central tenants of sexual and reproductive justice, including acknowledging historical harms in health care and honoring bodily autonomy for all people. By sharing Jasmine and Rosita's stories, we use a reproductive justice lens to (1) examine the historical roots of disproportional prescription of long-acting reversible contraception to historically marginalized individuals, (2) discuss provider bias related to sexual and reproductive health care, and (3) illustrate how trauma-informed care with a recognition of historical trauma and the use of individuation can facilitate positive and equitable health outcomes.

Adaptive Intervention to Prevent Respiratory Illness in Cerebral Palsy: Protocol for a Feasibility Pilot Randomized Controlled Trial.

BACKGROUND: This study will pilot-test an innovative just-in-time adaptive intervention to reduce severe respiratory illness among children with severe cerebral palsy (CP). Our intervention program, Respiratory Exacerbation-Plans for Action and Care Transitions (RE-PACT), delivers timely customized action planning and rapid clinical response when hospitalization risk is elevated. OBJECTIVE: This study aims to establish RE-PACT's feasibility, acceptability, and fidelity in up to 90 children with severe CP. An additional aim is to preliminarily estimate RE-PACT's effect size. METHODS: The study will recruit up to 90 caregivers of children with severe CP aged 0 to 17 years who are cared for by a respiratory specialist or are receiving daily respiratory treatments. Participants will be recruited from pediatric complex care programs at the University of Wisconsin-Madison (UW) and the University of California, Los Angeles (UCLA). Study participants will be randomly assigned to receive usual care through the complex care clinical program at UW or UCLA or the study intervention, RE-PACT. The intervention involves action planning, rapid clinical response to prevent and manage respiratory illness, and weekly SMS text messaging surveillance of caregiver confidence for their child to avoid hospitalization. RE-PACT will be run through 3 successively larger 6-month trial waves, allowing ongoing protocol refinement according to prespecified definitions of success for measures of feasibility, acceptability, and fidelity. The feasibility measures include recruitment and intervention time. The acceptability measures include recruitment and completion rates as well as intervention satisfaction. The fidelity measures include observed versus expected rates of intervention and data collection activities. The primary clinical outcome is a severe respiratory illness, defined as a respiratory diagnosis requiring hospitalization. The secondary clinical outcomes include hospital days and emergency department visits, systemic steroid courses, systemic antibiotic courses, and death from severe respiratory illness. RESULTS: The recruitment of the first wave began on April 27, 2022. To date, we have enrolled 30 (33%) out of 90 participants, as projected. The final wave of recruitment will end by October 31, 2023, and the final participant will complete the study by April 30, 2024. We will start analyzing the complete responses by April 30, 2024, and the publication of results is expected at the end of 2024. CONCLUSIONS: This pilot intervention, using adaptive just-in-time strategies, represents a novel approach to reducing the incidence of significant respiratory illness for children with severe CP. This protocol may be helpful to other researchers and health care providers caring for patients at high risk for acute severe illness exacerbations. TRIAL REGISTRATION: ClinicalTrials.gov NCT05292365; https://clinicaltrials.gov/study/NCT05292365. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/49705.

Developing a Sustainable Care Delivery Payment Model for Children With Medical Complexity.

Children with medical complexity (CMC) are a small but growing population representing <1% of all children while accounting for >30% of childhood health care expenditure. Complex care is a relatively new discipline that has emerged with goals of improving CMC care, optimizing CMC family function, and reducing health care costs. The provision of care coordination services is a major function of most complex care programs. Unfortunately, most complex care programs struggle to achieve financial sustainability in a predominately fee-for-service environment. The article describes how 2 programs in Wisconsin worked with their state Medicaid payer through a Centers for Medicare and Medicaid Services Health Care Innovation Award to develop a sustainable complex care payment model, and the value the payment model is currently bringing to stakeholders. Key elements of the process included: Developing a relationship between payer and clinicians that allowed for an understanding of each's viewpoint, use of an accepted clinical service model, and an effort to measure cost of care for the service provided supported by time-study methodology.

Designing for caregiving networks: a case study of primary caregivers of children with medical complexity.

OBJECTIVE: The study aimed to characterize the experiences of primary caregivers of children with medical complexity (CMC) in engaging with other members of the child's caregiving network, thereby informing the design of health information technology (IT) for the caregiving network. Caregiving networks include friends, family, community members, and other trusted individuals who provide resources, information, health, or childcare. MATERIALS AND METHODS: We performed a secondary analysis of two qualitative studies. Primary studies conducted semi-structured interviews (n = 50) with family caregivers of CMC. Interviews were held in the Midwest (n = 30) and the mid-Atlantic region (n = 20). Interviews were transcribed verbatim for thematic analysis. Emergent themes were mapped to implications for the design of future health IT. RESULTS: Thematic analysis identified 8 themes characterizing a wide range of primary caregivers' experiences in constructing, managing, and ensuring high-quality care delivery across the caregiving network. DISCUSSION: Findings evidence a critical need to create flexible and customizable tools designed to support hiring/training processes, coordinating daily care across the caregiving network, communicating changing needs and care updates across the caregiving network, and creating contingency plans for instances where caregivers are unavailable to provide care to the CMC. Informaticists should additionally design accessible platforms that allow primary caregivers to connect with and learn from other caregivers while minimizing exposure to sensitive or emotional content as indicated by the user. CONCLUSION: This article contributes to the design of health IT for CMC caregiving networks by uncovering previously underrecognized needs and experiences of CMC primary caregivers and drawing direct connections to design implications.

School Attendance Decisions for Children With Medical Complexity During COVID-19.

OBJECTIVE: School attendance by children with medical complexity (CMC) may be influenced by parent perceptions of their child's risk for coronavirus disease 2019 (COVID-19). The authors of this study aimed to quantify in-person school attendance and identify attendance predictors. METHODS: From June to August 2021, surveys were collected from English- and Spanish-speaking parents of children aged 5 to 17 years with ≥1 complex chronic condition who received care at an academic tertiary children's hospital in the Midwestern United States and who attended school prepandemic. The outcome, in-person attendance, was defined dichotomously as any in-person attendance versus none. We evaluated parent-perceived school attendance benefits, barriers, motivation, and cues, COVID-19 severity and susceptibility using survey items derived from the health belief model (HBM). Latent HBM constructs were estimated with exploratory factor analysis. Associations between the outcome and the HBM were evaluated with multivariable logistic regression and structural equation models. RESULTS: Among 1330 families (response rate 45%), 19% of CMC were not attending in-person school. Few demographic and clinical variables predicted school attendance. In adjusted models, family-perceived barriers, motivation, and cues predicted in-person attendance, whereas benefits, susceptibility, and severity did not. The predicted probability (95% confidence interval) of attendance ranged from 80% (70% to 87%) for high perceived barriers to 99% (95% to 99%) for low perceived barriers. Younger age (P <.01) and previous COVID-19 infection (P = .02) also predicted school attendance. CONCLUSIONS: Overall, 1 in 5 CMC did not attend school at the end of the 2020 to 2021 academic year. Family perceptions of schools' mitigation policies and encouragement of attendance may be promising avenues to address this disparity.

What makes a home? Designing home personas to represent the homes of families caring for children with medical complexity.

Personas are widely recognized as valuable design tools for communicating dimensions of individuals, yet they often lack critical contextual factors. For those people managing chronic health conditions, the home is a critical context of their patient work system (PWS). We propose the development of 'home personas' to convey essential aspects of the home context to those tasked with designing technologies and interventions to fit it. We used an iterative, multi-stakeholder design process to design 'home personas' for a model population, families caring for children with medical complexity. Each of the four resultant home personas-Multi-level, Customized, Ranch, and Rental-has a unique home layout, pain points, and are described on three dimensions that emerged from the data. This study builds on a foundation of work in the emerging field of Patient Ergonomics, describing a mechanism for distilling rich descriptions of the PWS into brief yet informative design tools.

Interventions in the Home and Community for Medically Complex Children: A Systematic Review.

CONTEXT: Most care occurs in home and community settings; however, the best approaches to improve CMC health are poorly understood. OBJECTIVE: We sought to summarize evidence from interventions in the home and community to improve health for children with medical complexity (CMC) using comprehensive conceptions of CMC health. DATA SOURCES: PubMed, CINAHL, Scopus, and Cochrane databases. STUDY SELECTION: Included studies evaluated interventions for CMC caregivers in home or community settings and evaluated at least 1 outcome in 10 domains of CMC health. DATA EXTRACTION: Data were extracted on participant characteristics, intervention activities, and outcomes. Interventions were categorized thematically into strategies, with results summarized by effects on outcomes within each health domain. RESULTS: The 25 included interventions used 5 strategies: intensive caregiver education (n = 18), support groups (n = 3), crisis simulation (n = 2), mobile health tracking (n = 1), and general education (n = 1). Substantial variation existed in the extent to which any outcome domain was studied (range 0-22 studies per domain). Interventions addressing 4 domains showed consistent improvement: support group and mobile health tracking improved long-term child and caregiver self-sufficiency; mobile health tracking improved family-centered care; intensive caregiver education and support groups improved community system supports. Three domains (basic needs, inclusive education, patient-centered medical home) were not studied. LIMITATIONS: Risk of bias was moderate due primarily to limited controlled experimental designs and heterogeneous population and outcome definitions. CONCLUSIONS: Interventions that improve CMC health exist; however, current studies focus on limited segments of the 10 domains framework. Consensus outcome measures for CMC health are needed.

Barriers to and facilitators of a just-in-time adaptive intervention for respiratory illness in cerebral palsy: a qualitative study.

OBJECTIVE: To understand caregiver, healthcare professional and national expert perspectives on implementation of a just-in-time adaptive intervention, RE-PACT (Respiratory Exacerbation-Plans for Action and Care Transitions) to prevent respiratory crises in severe cerebral palsy. DESIGN: Qualitative research study. SETTING: Paediatric complex care programmes at two academic medical institutions. PARTICIPANTS: A total of n=4 focus groups were conducted with caregivers of children with severe cerebral palsy and chronic respiratory illness, n=4 with healthcare professionals, and n=1 with national experts. METHODS: Participants viewed a video summarising RE-PACT, which includes action planning, mobile health surveillance of parent confidence to avoid hospitalisation and rapid clinical response at times of low confidence. Moderated discussion elicited challenges and benefits of RE-PACT's design, and inductive thematic analysis elicited implementation barriers and facilitators. RESULTS: Of the 19 caregivers recruited, nearly half reported at least one hospitalisation for their child in the prior year. Healthcare professionals and national experts (n=26) included physicians, nurses, respiratory therapists, social workers and researchers. Four overarching themes and their barriers/facilitators emphasised the importance of design and interpersonal relationships balanced against health system infrastructure constraints. Intervention usefulness in crisis scenarios relies on designing action plans for intuitiveness and accuracy, and mobile health surveillance tools for integration into daily life. Trust, knowledge, empathy and adequate clinician capacity are essential components of clinical responder-caregiver relationships. CONCLUSIONS: RE-PACT's identified barriers are addressable. Just-in-time adaptive interventions for cerebral palsy appear well-suited to address families' need to tailor intervention content to levels of experience, preference and competing demands.

Feasibility Testing of Tubes@HOME: A Mobile Application to Support Family-Delivered Enteral Care.

BACKGROUND: Assistance from medical devices is common for children with medical complexity (CMC) but introduces caregiving challenges. We tested the feasibility of "Tubes@HOME," a mobile application supporting CMC family-delivered care using enteral care as a model. METHODS: Caregivers of CMC with enteral tubes participated in a 30-day feasibility study of Tubes@HOME November 2020 through January 2021. Tubes@HOME was available on mobile devices and designed to support collaborative care and tracking over time. Key features include child profile, caregiving network management, care routines, feedback loop, and action plans. Care routines delineated nutrition, medication, and procedural tasks needed for the child: frequencies, completions, and reminders. Metadata summarized feature use among users. Feasibility was evaluated with postuse questionnaires and interviews. Measures of Tubes@HOME's usability and usefulness included the NASA Task Load Index (TLX), System Usability Scale (SUS), and Acceptability and Use of Technology Questionnaire (AUTQ). RESULTS: Among n = 30 children, there were 30 primary (eg, parent) and n = 22 nonprimary caregivers using Tubes@HOME. Children had a median (IQR) 10 (5.5-13) care routines created. For care routines created, 93% were marked complete at least once during the study period, with participants engaging with routines throughout study weeks 2 to 4. Results (mean [SD]) indicated low mental workload (TLX) 30.9 (12.2), good usability (SUS) 75.4 (14.7), and above-average usefulness (AUTQ) 4.0 (0.7) associated with Tubes@HOME, respectively. Interviews contextualized usefulness and suggested improvements. CONCLUSIONS: Longitudinal use of Tubes@HOME among caregiving networks appeared feasible. Efficacy testing is needed, and outcomes could include reliability of care delivered in home and community.

COVID-19 Vaccination Intentions for Children With Medical Complexity.

OBJECTIVES: The chronic conditions and functional limitations experienced by children with medical complexity (CMC) place them at disproportionate risk for COVID-19 transmission and poor outcomes. To promote robust vaccination uptake, specific constructs associated with vaccine hesitancy must be understood. Our objective was to describe demographic, clinical, and vaccine perception variables associated with CMC parents' intention to vaccinate their child against COVID-19. METHODS: We conducted a cross-sectional survey (June-August 2021) for primary caregivers of CMC between ages 5 to 17 at an academic medical center in the Midwest. Multivariable logistic regression examined associations between vaccination intent and selected covariates. RESULTS: Among 1330 families, 65.8% indicated vaccination intent. In multivariable models, demographics had minimal associations with vaccination intent; however, parents of younger children (<12 years) had significantly lower adjusted odds of vaccination intent (adjusted odds ratio [95% confidence interval]: 0.26 [0.17-0.3]) compared to parents of older children (≥12 years). CMC with higher severity of illness, ie, those with ≥1 hospitalization in the previous year (versus none) or >1 complex chronic condition (vs 1), had higher adjusted odds of vaccination intent (1.82 [1.14-2.92] and 1.77 [1.16-2.71], respectively). Vaccine perceptions associated with vaccine intention included "My doctor told me to get my child a COVID-19 vaccine" (2.82 [1.74-4.55]); and "I'm concerned about my child's side effects from the vaccine" (0.18 [0.12-0.26]). CONCLUSIONS: One-third of CMC families expressed vaccine hesitation; however, constructs strongly associated with vaccination intent are potentially modifiable. Pediatrician endorsement of COVID-19 vaccination and careful counseling on side effects might be promising strategies to encourage uptake.

Priorities for Safer In-Person School for Children With Medical Complexity During COVID-19.

OBJECTIVES: To establish statewide consensus priorities for safer in-person school for children with medical complexity (CMC) during the coronavirus disease 2019 (COVID-19) pandemic using a rapid, replicable, and transparent priority-setting method. METHODS: We adapted the Child Health and Nutrition Research Initiative Method, which allows for crowdsourcing ideas from diverse stakeholders and engages technical experts in prioritizing these ideas using predefined scoring criteria. Crowdsourcing surveys solicited ideas from CMC families, school staff, clinicians and administrators through statewide distribution groups/listservs using the prompt: "It is safe for children with complex health issues and those around them (families, teachers, classmates, etc.) to go to school in-person during the COVID-19 pandemic if/when…" Ideas were aggregated and synthesized into a unique list of candidate priorities. Thirty-four experts then scored each candidate priority against 5 criteria (equity, impact on COVID-19, practicality, sustainability, and cost) using a 5-point Likert scale. Scores were weighted and predefined thresholds applied to identify consensus priorities. RESULTS: From May to June 2021, 460 stakeholders contributed 1166 ideas resulting in 87 candidate priorities. After applying weighted expert scores, 10 consensus CMC-specific priorities exceeded predetermined thresholds. These priorities centered on integrating COVID-19 safety and respiratory action planning into individualized education plans, educating school communities about CMC's unique COVID-19 risks, using medical equipment safely, maintaining curricular flexibility, ensuring masking and vaccination, assigning seats during transportation, and availability of testing and medical staff at school. CONCLUSIONS: Priorities for CMC, identified by statewide stakeholders, complement and extend existing recommendations. These priorities can guide implementation efforts to support safer in-person education for CMC.

Complex Care Program Enrollment and Change in ED and Hospital Visits from Medical Device Complications.

INTRODUCTION: Medical device-related complications often lead to emergency department (ED) visits and hospitalizations for children with medical complexity (CMC), and pediatric complex care programs may be one way to decrease unnecessary encounters. METHODS: A retrospective cohort study comparing ED and inpatient encounters due to device complications of 2 cohorts of CMC at a single children's hospital during 2014-2016; 99 enrolled in a complex care program and 244 in a propensity-matched comparison group. Structured chart reviews identified ED and inpatient encounters due to device complications. The outcome was a change in the frequency of these encounters from the year before to the year after enrollment in the hospital's complex care program. Program effects were estimated with weighted difference-in-differences (DiDs), comparing the change in mean encounter frequency for CMC enrolled in the program with change for propensity-matched children not enrolled in the program. RESULTS: Mean encounters related to device complications decreased for both groups. Complication-related ED encounters per year decreased from a weighted mean (SD) of 0.74 (0.85) to 0.30 (0.44) in enrolled children and 0.26 (0.89) to 0.12 (0.56) in comparison children, a DiD of 0.30 fewer [95% confidence interval (CI) -0.01 to 0.60]. The largest reductions in device complication ED visits were among those with enteral tubes [0.36 fewer (95% CI 0.04-0.68)]. Hospitalizations decreased over time, but DiDs were not significantly different between groups. CONCLUSIONS: Acute care use from device complications decreased with time. Complex care program enrollment may be associated with more substantial reductions in device complication ED visits, and effects may be most pronounced for CMC with enteral tubes.

Medical Device Workarounds in Providing Care for Children With Medical Complexity in the Home.

OBJECTIVES: Children with medical complexity (CMC) are commonly assisted by medical devices, which family caregivers are responsible for managing and troubleshooting in the home. Optimizing device use by maximizing the benefits and minimizing the complications is a critical goal for CMC but is relatively unexplored. In this study, we sought to identify and describe workarounds families have developed to optimize medical device use for their needs. METHODS: We conducted 30 contextual inquiry interviews with families of CMC in homes. Interviews were recorded, transcribed, and analyzed for barriers and workarounds specific to medical device usage through a directed content analysis. We used observation notes and photographs to confirm and elaborate on interview findings. RESULTS: We identified 4 barriers to using medical devices in the home: (1) the quantity and type of devices allotted do not meet family needs, (2) the device is not designed to be used in locations families require, (3) device use is physically or organizationally disruptive to the home, and (4) the device is not designed to fit the user. We also identified 11 categories of workarounds to the barriers. CONCLUSIONS: Families face many barriers in using medical devices to care for CMC. Our findings offer rich narrative and photographic data revealing the ways in which caregivers work around these barriers. Future researchers should explore the downstream effects of these ubiquitous, necessary workarounds on CMC outcomes toward developing interventions that optimize device use for families.

Hemosuccus Pancreaticus Following Acute Pancreatitis in a 12-years-old Boy Secondary to Pancreatic Pseudoaneurysm Treated With Endovascular Coil Embolization.

Hemosuccus pancreaticus is a very rare cause of upper gastrointestinal bleeding in children. It is defined as bleeding from the pancreatic or peripancreatic vessels into the main pancreatic duct and may be life-threatening. We present the case of a 12-year-old boy with hematemesis and severe anemia that developed following an episode of acute pancreatitis. Upper endoscopy did not reveal a bleeding source. An endoscopic retrograde cholangiopancreatography performed for the evaluation of common bile duct obstruction identified bleeding from the pancreatic duct. Subsequently, the bleeding source, a pseudoaneurysm of the splenic artery, was identified by conventional angiography and occluded with coil embolization. The diagnosis of hemosuccus pancreaticus may be difficult in children due to rare occurrence and the unusual anatomical site; hence, a high index of suspicion is needed in a patient with a history of pancreatitis who presents with intermittent upper gastrointestinal bleeding and normal upper endoscopy.

Priorities and Outcomes for Youth-Adult Transitions in Hospital Care: Perspectives of Inpatient Clinical Leaders at US Children's Hospitals.

OBJECTIVES: Adults with chronic conditions originating in childhood experience ongoing hospitalizations; however, efforts to guide youth-adult transitions rarely address transitioning to adult-oriented inpatient care. Our objectives were to identify perceptions of clinical leaders on important and feasible inpatient transition activities and outcomes, including when, how, and for whom inpatient transition processes are needed. METHODS: Clinical leaders at US children's hospitals were surveyed between January and July 2016. Questionnaires were used to assess 21 inpatient transition activities and 13 outcomes. Perceptions about feasible and important outcome measures and appropriate patients and settings for activities were summarized. Each transition activity was categorized into one of the Six Core Elements (policy, tracking, readiness, planning, transfer, or completion). Associations between perceived transition activity importance or feasibility, hospital characteristics, and transition activity performance were evaluated. RESULTS: In total, 96 of 195 (49.2%) children's hospital leaders responded. The most important and feasible activities were identifying patients needing or overdue for transition, discussing transition timing with youth and/or families, and informing youth and/or families that future stays would be at an adult facility. Feasibility, but not importance, ratings were associated with current performance of transition activities. Inpatient transition activities were perceived to be important for children with medical and/or social complexity or high hospital use. Emergency department visits and patient experience during transition were top outcome measurement priorities. CONCLUSIONS: Children's hospital clinical leaders rated inpatient youth-adult transition activities and outcome measures as important and feasible; however, feasibility may ultimately drive implementation. This work should be used to inform initial research and quality improvement priorities, although additional stakeholder perspectives are needed.