Perioperative management of gastrostomy tube placement in Duchenne muscular dystrophy adolescent and young adult patients: A role for a perioperative surgical home.

BACKGROUND: In past decades, Duchenne muscular dystrophy patients have been living longer and as the disease advances, patients experience multisystemic deterioration. Older patients often require gastrostomy tube placement for nutritional support. For optimizing the perioperative care, a practice of multidisciplinary team can better anticipate, prevent, and manage possible complications and reduce the overall perioperative morbidity and mortality. AIMS: The aim of this study was to review our experience with perioperative care of adolescent and young adults with Duchenne muscular dystrophy undergoing gastrostomy by various surgical approaches in order to identify challenges and improve future perioperative care coordination to reduce morbidity. METHODS: We retrospectively examined cases of gastrostomy tube placement in patients of ages 15 years and older between 2005 and 2016. We reviewed preoperative evaluation, anesthetic and surgical management, and postoperative complications. RESULTS: Twelve patients were identified; 1 had open gastrostomy, 3 laparoscopic gastrostomies, 5 percutaneous endoscopic guided, and 3 radiologically inserted gastrostomy tubes. All patients had preoperative cardiac evaluation with 6 patients demonstrating cardiomyopathy. Nine patients had preoperative pulmonary consultations and the pulmonary function tests reported forced vital capacity of ≤36% of predicted. Eight patients were noninvasive positive pressure ventilation dependent. General anesthesia with tracheal intubation was administered in 8 patients, and intravenous sedation in 4 patients; 1 received sedation supplemented with regional anesthesia and 3 received deep sedation. One patient had a difficult intubation that resulted in trauma and prolonged tracheal intubation. Three patients developed postoperative respiratory complications. Two patients' procedures were postponed due to inadequate preoperative evaluation and 1 because of disagreement between anesthesia and procedural services as to the optimal approach for airway management. CONCULSION: Optimal management of the perioperative care of Duchenne muscular dystrophy patients requires input from relevant medical specialists, proceduralist and anesthesiologist. This complexity of care coordination presents an opportunity for anesthesiologists to lead a collaborative perioperative team in management of advanced Duchenne patients coming for gastrostomy.

Measuring Care Coordination in the Pediatric Cardiology Ambulatory Setting.

The role of ambulatory nursing is diverse, and the impact on patient outcomes is difficult to measure. The concept of care coordination is an important focus for the ambulatory nurse. We describe the efforts to implement the Cardiac Care Coordination Measurement Tool to document and quantify care coordination activities in a pediatric cardiac ambulatory setting.

No Equity, No Triple Aim: Strategic Proposals to Advance Health Equity in a Volatile Policy Environment.

Health professionals, including social workers, community health workers, public health workers, and licensed health care providers, share common interests and responsibilities in promoting health equity and improving social determinants of health-the conditions in which people live, work, play, and learn. We summarize the underlying causes of health inequity and comparatively poor health outcomes in the United States. We describe barriers to realizing the hope embedded in the 2010 Patient Protection and Affordable Care Act, that moving away from fee-for-service payments will naturally drive care upstream as providers respond to greater financial risk by undertaking greater prevention efforts for the health of their patients. We assert that health equity should serve as the guiding framework for achieving the Triple Aim of health care reform and outline practical opportunities for improving care and promoting stronger efforts to address social determinants of health. These proposals include developing a dashboard of measures to assist providers committed to health equity and community-based prevention and to promote institutional accountability for addressing socioeconomic factors that influence health.

Optimizing health and health care systems for children with special health care needs using the life course perspective.

To date, life course research in maternal and child health has largely focused on elucidating fetal and early life influences on adult health and less on promoting the health of children with special health care needs (CSHCN). Consideration of life course theory (LCT) for CSHCN is especially important given their increasing prevalence and comorbidity, their disproportionate vulnerability to weaknesses or instability in the health care system, and the growing evidence linking child and adult health and quality of life. In this commentary we seek to advance the consideration of LCT for CSHCN. We (1) briefly summarize key issues and the importance of a life course approach for CSHCN; (2) present illustrative findings from population-based cross-sectional data that serve to generate hypotheses that can be more rigorously examined when population-based longitudinal data become available; and (3) discuss the application of life course principles as a driving force in the continued implementation and improvement of integrated systems of care for CSHCN.

Characterizing psychosocial services in a pediatric urology practice.

INTRODUCTION: Psychosocial needs, which encompass behavioral health and social determinants of health (SDOH), are important mediators of the patient experience and health outcomes. However, many practices have limited experience with systematically assessing the non-billable psychosocial services provided to patients and families. OBJECTIVE: To characterize the non-billable activities of three psychosocial providers in a pediatric urology practice at a freestanding children's hospital. STUDY DESIGN: Following Institutional Review Board approval, an adapted version of the Care Coordination Measurement Tool (CCMT) was used to collect data prospectively on non-billable activities performed by a psychologist, social worker (SW), and certified child life specialist (CCLS) in a pediatric urology department. Variables included activity type, time spent per activity, and outcomes affected. Demographic data included age, sex, race, state, zip code, insurance type, and language. RESULTS: From April to October 2022, 3096 activities were performed in support of psychosocial needs over 947 encounters for 527 patients. The median patient age was 9.2 years (IQR 4.8-12.4); 48.4 % were male. The psychosocial providers most commonly identified care coordination needs related to delivery of urologic care (73.4 %), mental/behavioral/developmental health (29.1 %), and referral and appointment management (19.9 %). The largest proportion of time was spent on providing direct psychosocial support (45.9 %), consisting of psychosocial assessments, education, and other behavioral health interventions. A large proportion of time was also spent on care coordination activities, namely logistics and navigation support (35.9 %). Relative time allocation across activities varied by provider type (p < 0.001); care coordination constituted 64.2 % of non-billable activities for the psychologist, 57.8 % for the SW, and 12.3 % for the CCLS. Activities were associated with treatment plan modification in 37.7 % (n = 357), outpatient coordination in 22.5 % (n = 213), and treatment plan adherence in 19.0 % (n = 180) of encounters. DISCUSSION: This study enhances our understanding of psychosocial needs of patients in a pediatric urology practice by assessing non-billable psychosocial services not otherwise captured in the clinical workflow. In addition to direct psychosocial support, care coordination activities constitute a large proportion of such services. These data provide valuable insight into the range of activities necessary for the provision of specialty pediatric medical care. CONCLUSION: Psychosocial providers in a pediatric urology practice perform many non-billable care coordination and psychosocial support activities. Characterizing these activities is important for beginning to understand patients' psychosocial needs and informing resource deployment.

Hospital readmission and parent perceptions of their child's hospital discharge.

OBJECTIVE: To describe parent perceptions of their child's hospital discharge and assess the relationship between these perceptions and hospital readmission. DESIGN: A prospective study of parents surveyed with questions adapted from the care transitions measure, an adult survey that assesses components of discharge care. Participant answers, scored on a 5-point Likert scale, were compared between children who did and did not experience a readmission using a Fisher's exact test and logistic regression that accounted for patient characteristics associated with increased readmission risk, including complex chronic condition and assistance with medical technology. SETTING: A tertiary-care children's hospital. PARTICIPANTS: A total of 348 parents surveyed following their child's hospital discharge between March and October 2010. INTERVENTION: None. MAIN OUTCOME MEASURE: Unplanned readmission within 30 days of discharge. RESULTS: There were 28 children (8.1%) who experienced a readmission. Children had a lower readmission rate (4.4 vs. 11.3%, P = 0.004) and lower adjusted readmission likelihood [odds ratio 0.2 (95% confidence interval 0.1, 0.6)] when their parents strongly agreed (n = 206) with the statement, 'I felt that my child was healthy enough to leave the hospital' from the index admission. Parent perceptions relating to care management responsibilities, medications, written discharge plan, warning signs and symptoms to watch for and primary care follow-up were not associated with readmission risk in multivariate analysis. CONCLUSIONS: Parent perception of their child's health at discharge was associated with the risk of a subsequent, unplanned readmission. Addressing concerns with this perception prior to hospital discharge may help mitigate readmission risk in children.

Feasibility of Implementation of a Mobile Digital Personal Health Record to Coordinate Care for Children and Youth With Special Health Care Needs in Primary Care: Protocol for a Mixed Methods Study.

BACKGROUND: Electronic health record (EHR)-integrated digital personal health records (PHRs) via Fast Healthcare Interoperability Resources (FHIR) are promising digital health tools to support care coordination (CC) for children and youth with special health care needs but remain widely unadopted; as their adoption grows, mixed methods and implementation research could guide real-world implementation and evaluation. OBJECTIVE: This study (1) evaluates the feasibility of an FHIR-enabled digital PHR app for CC for children and youth with special health care needs, (2) characterizes determinants of implementation, and (3) explores associations between adoption and patient- or family-reported outcomes. METHODS: This nonrandomized, single-arm, prospective feasibility trial will test an FHIR-enabled digital PHR app's use among families of children and youth with special health care needs in primary care settings. Key app features are FHIR-enabled access to structured data from the child's medical record, families' abilities to longitudinally track patient- or family-centered care goals, and sharing progress toward care goals with the child's primary care provider via a clinician dashboard. We shall enroll 40 parents or caregivers of children and youth with special health care needs to use the app for 6 months. Inclusion criteria for children and youth with special health care needs are age 0-16 years; primary care at a participating site; complex needs benefiting from CC; high hospitalization risk in the next 6 months; English speaking; having requisite technology at home (internet access, Apple iOS mobile device); and an active web-based EHR patient portal account to which a parent or caregiver has full proxy access. Digital prescriptions will be used to disseminate study recruitment materials directly to eligible participants via their existing EHR patient portal accounts. We will apply an intervention mixed methods design to link quantitative and qualitative (semistructured interviews and family engagement panels with parents of children and youth with special health care needs) data and characterize implementation determinants. Two CC frameworks (Pediatric Care Coordination Framework; Patient-Centered Medical Home) and 2 evaluation frameworks (Consolidated Framework for Implementation Research; Technology Acceptance Model) provide theoretical foundations for this study. RESULTS: Participant recruitment began in fall 2022, before which we identified >300 potentially eligible patients in EHR data. A family engagement panel in fall 2021 generated formative feedback from family partners. Integrated analysis of pretrial quantitative and qualitative data informed family-centered enhancements to study procedures. CONCLUSIONS: Our findings will inform how to integrate an FHIR-enabled digital PHR app for children and youth with special health care needs into clinical care. Mixed methods and implementation research will help strengthen implementation in diverse clinical settings. The study is positioned to advance knowledge of how to use digital health innovations for improving care and outcomes for children and youth with special health care needs and their families. TRIAL REGISTRATION: ClinicalTrials.gov NCT05513235; https://clinicaltrials.gov/study/NCT05513235. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/46847.

Outcomes of End-User Testing of a Care Coordination Mobile App With Families of Children With Special Health Care Needs: Simulation Study.

BACKGROUND: Care for children with special health care needs relies on a network of providers who work to address the medical, behavioral, developmental, educational, social, and economic needs of the child and their family. Family-directed, manually created visual depictions of care team composition (ie, care mapping) and detailed note-taking curated by caregivers (eg, care binders) have been shown to enhance care coordination for families of these children, but they are difficult to implement in clinical settings owing to a lack of integration with electronic health records and limited visibility of family-generated insights for care providers. Caremap is an electronic health record-integrated digital personal health record mobile app designed to integrate the benefits of care mapping and care binders. Currently, there is sparse literature describing end-user participation in the co-design of digital health tools. In this paper, we describe a project that evaluated the usability and proof of concept of the Caremap app through end-user simulation. OBJECTIVE: This study aimed to conduct proof-of-concept testing of the Caremap app to coordinate care for children with special health care needs and explore early end-user engagement in simulation testing. The specific aims included engaging end users in app co-design via app simulation, evaluating the usability of the app using validated measures, and exploring user perspectives on how to make further improvements to the app. METHODS: Caregivers of children with special health care needs were recruited to participate in a simulation exercise using Caremap to coordinate care for a simulated case of a child with complex medical and behavioral needs. Participants completed a postsimulation questionnaire adapted from 2 validated surveys: the Pediatric Integrated Care Survey (PICS) and the user version of the Mobile Application Rating Scale (uMARS). A key informant interview was also conducted with a liaison to Spanish-speaking families regarding app accessibility for non-English-speaking users. RESULTS: A Caremap simulation was successfully developed in partnership with families of children with special health care needs. Overall, 38 families recruited from 19 different US states participated in the simulation exercise and completed the survey. The average rating for the survey adapted from the PICS was 4.1 (SD 0.82) out of 5, and the average rating for the adapted uMARS survey was 4 (SD 0.83) out of 5. The highest-rated app feature was the ability to track progress toward short-term, patient- and family-defined care goals. CONCLUSIONS: Internet-based simulation successfully facilitated end-user engagement and feedback for a digital health care coordination app for families of children with special health care needs. The families who completed simulation with Caremap rated it highly across several domains related to care coordination. The simulation study results elucidated key areas for improvement that translated into actionable next steps in app development.

Development and Evaluation of an Integrated Outpatient Infusion Care Model for the Treatment of Pediatric Headache.

BACKGROUND: Care for pediatric patients with headache often occurs in high-cost settings such as emergency departments (EDs) and inpatient settings. Outpatient infusion centers have the potential to reduce care costs for pediatric headache management. METHODS: In this quality improvement study, we describe our experience in creating the capacity to support an integrated outpatient pediatric headache infusion care model through an infusion center. We compare costs of receiving headache treatment in this model with those in the emergency and inpatient settings. Because dihydroergotamine (DHE) is a costly infusion, encounters at which DHE was administered were analyzed separately. We track the number of ED visits and inpatient admissions for headache using run charts. As a balancing measure, we compare treatment efficacy between the infusion care model and the inpatient setting. RESULTS: The mean percentage increase in cost of receiving headache treatment in the inpatient setting with DHE was 61% (confidence interval [CI]: 30-99%), and that without DHE was 582% (CI: 299-1068%) compared with receiving equivalent treatments in the infusion center. The mean percentage increase in cost of receiving headache treatment in the ED was 30% (CI: -15 to 100%) compared with equivalent treatment in the infusion center. After the intervention, ED visits and inpatient admissions for headache decreased. The mean change in head pain was similar across care settings. CONCLUSIONS: Our findings demonstrate that developing an integrated ambulatory care model with infusion capacity for refractory pediatric headache is feasible, and our early outcomes suggest this may have a favorable impact on the overall value of care for this population.

Improving Care for Families and Children with Neurodevelopmental Disorders and Co-occurring Chronic Health Conditions Using a Care Coordination Intervention.

OBJECTIVE: This clinical intervention study aimed to improve care integration and health service delivery for children with concurrent neurodevelopmental disorders and chronic health conditions. This population has significant unmet needs and disproportionate deficits in service delivery. A lack of coordination across child service sectors is a common barrier to successful treatment and support of children with neurodevelopmental disorders with complex medical needs. METHODS: This project implemented an innovative care coordination model, involving one-on-one supports from a trained care coordinator who liaised with the broader intersectoral care team to improve joint care planning, integration of services, and the experience of both families and care providers. To evaluate the impact of care coordination activities, a single-group interventional study was conducted using a repeated-measures framework (at 0, 6, and 12 months) using previously established outcome measures. RESULTS: Over 2 years, this project provided care coordination to 84 children and their families, with an age range from 2 to 17 years. The care coordination intervention demonstrated positive impacts for children, families, and care teams and contributed to clinical efficiencies. Children had fewer visits to the emergency department and less frequent acute care use. Improvement in access to services, joint care planning and communication across providers, and better linkage with school supports were demonstrated. Families reported that the program decreased their stress around coordinating care for their child. CONCLUSION: This work demonstrated that intersectoral care coordination is attainable through innovative and collaborative practice for children with complex neurodevelopmental and medical needs.

The JmjC domain protein Epe1 prevents unregulated assembly and disassembly of heterochromatin.

Heterochromatin normally has prescribed chromosomal positions and must not encroach on adjacent regions. We demonstrate that the fission yeast protein Epe1 stabilises silent chromatin, preventing the oscillation of heterochromatin domains. Epe1 loss leads to two contrasting phenotypes: alleviation of silencing within heterochromatin and expansion of silent chromatin into neighbouring euchromatin. Thus, we propose that Epe1 regulates heterochromatin assembly and disassembly, thereby affecting heterochromatin integrity, centromere function and chromosome segregation fidelity. Epe1 regulates the extent of heterochromatin domains at the level of chromatin, not via the RNAi pathway. Analysis of an ectopically silenced site suggests that heterochromatin oscillation occurs in the absence of heterochromatin boundaries. Epe1 requires predicted iron- and 2-oxyglutarate (2-OG)-binding residues for in vivo function, indicating that it is probably a 2-OG/Fe(II)-dependent dioxygenase. We suggest that, rather than being a histone demethylase, Epe1 may be a protein hydroxylase that affects the stability of a heterochromatin protein, or protein-protein interaction, to regulate the extent of heterochromatin domains. Thus, Epe1 ensures that heterochromatin is restricted to the domains to which it is targeted by RNAi.

Hsk1-Dfp1 is required for heterochromatin-mediated cohesion at centromeres.

Heterochromatin performs a central role in chromosome segregation and stability by promoting cohesion at centromeres. Establishment of both heterochromatin-mediated silencing and cohesion requires passage through S phase, although the mechanism is unknown. Here we demonstrate that Schizosaccharomyces pombe Hsk1 (CDC7), a conserved Dbf4-dependent protein kinase (DDK) that regulates replication initiation, interacts with and phosphorylates the heterochromatin protein 1 (HP1) equivalent Swi6 (ref. 6). Hsk1 and its regulatory subunit Dfp1 function downstream of Swi6 localization to promote heterochromatin function and cohesion specifically at centromeres. This role for Hsk1-Dfp1 is separable from its replication initiation activity, providing a temporal link between S phase and centromere cohesion that is mediated by heterochromatin.

Health information management and perceptions of the quality of care for children with tracheotomy: a qualitative study.

BACKGROUND: Children with tracheotomy receive health care from an array of providers within various hospital and community health system sectors. Previous studies have highlighted substandard health information exchange between families and these sectors. The aim of this study was to investigate the perceptions and experiences of parents and providers with regard to health information management, care plan development and coordination for children with tracheotomy, and strategies to improve health information management for these children. METHODS: Individual and group interviews were performed with eight parents and fifteen healthcare (primary and specialty care, nursing, therapist, equipment) providers of children with tracheotomy. The primary tracheotomy-associated diagnoses for the children were neuromuscular impairment (n = 3), airway anomaly (n = 2) and chronic lung disease (n = 3). Two independent reviewers conducted deep reading and line-by-line coding of all transcribed interviews to discover themes associated with the objectives. RESULTS: Children with tracheotomy in this study had healthcare providers with poorly defined roles and responsibilities who did not actively communicate with one another. Providers were often unsure where to find documentation relating to a child's tracheotomy equipment settings and home nursing orders, and perceived that these situations contributed to medical errors and delayed equipment needs. Parents created a home record that was shared with multiple providers to track the care that their children received but many considered this a burden better suited to providers. Providers benefited from the parent records, but questioned their accuracy regarding critical tracheotomy care plan information such as ventilator settings. Parents and providers endorsed potential improvement in this environment such as a comprehensive internet-based health record that could be shared among parents and providers, and between various clinical sites. CONCLUSIONS: Participants described disorganized tracheotomy care and health information mismanagement that could help guide future investigations into the impact of improved health information systems for children with tracheotomy. Strategies with the potential to improve tracheotomy care delivery could include defined roles and responsibilities for tracheotomy providers, and improved organization and parent support for maintenance of home-based tracheotomy records with web-based software applications, personal health record platforms and health record data authentication techniques.

Children With Special Needs: Social Determinants of Health and Care Coordination.

Care coordination (CC) facilitates access to resources/services for children/youth with special health care needs (CYSHCN). We conducted a cross-sectional analysis of the 2009-2010 National Survey of CSHCN to examine socioeconomic factors related to report of receiving adequate CC services for CYSHCN. Descriptive statistics were used to describe sociodemographic characteristics of respondents and examine socioeconomic factors. Receiving adequate CC varied by socioeconomic variables including income (100% to 199% federal poverty line [FPL]; aOR [adjusted odds ratio] = 0.848; 95% CI [confidence interval] = 0.722-0.997; P < .05), insurance (uninsured; aOR = 0.446; 95% CI = 0.326-0.609; P < .0001), and marital status (never married; aOR = 0.79; 95% CI = 0.64-0.97; P < .05). More families reporting adequate CC had private insurance, non-Hispanic white ethnicity, income >400% federal poverty level, and 2-parent households. Findings suggest unmet needs in terms of adequate access or knowledge leading to insufficient provision of CC for families with the greatest needs. Further analysis identifying specific deficits and implementing strategies to address these disparities is warranted.

Improving outcomes through care coordination: Measuring care coordination of nurse practitioners.

BACKGROUND: Gaps in care coordination (CC) between inpatient and outpatient settings for children with medical complexity (CMC) can result in treatment delays, gaps in communication, missed appointments, medication discrepancies, and ultimately impacts the provision of quality care. LOCAL PROBLEM: As care for pediatric patients with medical complexity moves into community settings, various ambulatory settings, including infusion settings, are caring for patients who would otherwise often require inpatient hospitalization to receive their care. To better accommodate this growing demand, nurse practitioners (NPs) have been used to support these nurse-led infusion programs. The purpose of this quality improvement (QI) project was to quantify and describe the outcomes of CC by NPs in this ambulatory setting. METHODS: A quantitative design was used. INTERVENTIONS: We captured nonreimbursable CC activities provided by NPs and associated outcome(s) among pediatric patients seen in two ambulatory infusion clinics, at Boston Children's Hospital between January and April 2017, and generated summary statistics for this QI project. RESULTS: There were 259 nonreimbursable CC encounters. Most of the CC activities prevented delays in treatment (38%), adverse reaction to medicine because of medication discrepancies (8%), need for additional subspecialist visits (10%), missed infusion appointments (5%), and emergency department visits (2%). CONCLUSION: Nonreimbursable CC provided by NPs in a tertiary hospital-based ambulatory program improved outcomes of care for CMC and helped facilitate health care use. This project quantified and described the outcomes of CC provided by NPs, and the value of CC on CMC.

Evolving Federal and State Health Care Policy: Toward a More Integrated and Comprehensive Care-Delivery System for Children With Medical Complexity.

Irrespective of any future changes in federal health policy, the momentum to shift from fee-for-service to value-based payment systems is likely to persist. Public and private payers continue to move toward alternative payment models that promote novel care-delivery systems and greater accountability for health outcomes. With a focus on population health, patient-centered medical homes, and care coordination, alternative payment models hold the potential to promote care-delivery systems that address the unique needs of children with medical complexity (CMC), including nonmedical needs and the social determinants of health. Notwithstanding, the implementation of care systems with meaningful quality measures for CMC poses unique and substantive challenges. Stakeholders must view policy options for CMC in the context of transformation within the overall health system to understand how broader health system changes impact care delivery for CMC.

Care Coordination for Children and Youth With Special Health Care Needs: National Survey Results.

We analyzed findings from the 2009-2010 National Survey of Children with Special Health Care Needs to identify associations between families with children and youth with special health care needs (CYSHCN) reporting adequate care coordination (CC) with family-provider relations, shared decision making (SDM), and child outcomes. Eligible subjects were the 98% of families asked about CC, service use, and communication. Bivariate analysis using χ2 tests were performed on binary outcome variables to determine the strength of the associations between CC and independent and dependent variables. Weighted, multivariate logistic regression models were constructed to assess independent associations of adequate CC with child outcomes and associations of SDM on adequate CC. Among families of CYSHCN asked about CC, 72% reported receiving help with CC. Of these, 55% reported receiving adequate CC. Family report of adequate CC was favorably associated with family-provider relations, child outcomes, and report of provider participation in SDM.