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.

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.

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.

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.

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.

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.

Utilizing a Modified Care Coordination Measurement Tool to Capture Value for a Pediatric Outpatient Parenteral and Prolonged Oral Antibiotic Therapy Program.

BACKGROUND: Outpatient parenteral or prolonged oral antibiotic therapy (OPAT) programs reduce inpatient healthcare costs by shifting care to outpatient settings. Care coordination (CC) is a necessary component to successfully transition patients. Our objective was to assess outcomes of provider time spent on nonreimbursable CC activities in a pediatric OPAT program. METHODS: We used a qualitative feasibility pilot design and modified the Care Coordination Measurement Tool. We captured nonreimbursable CC activity and associated outcome(s) among pediatric patients enrolled in OPAT from March 1 to April 30, 2015 (44 work days) at Doernbecher Children's Hospital. We generated summary statistics for this institutional review board-waived QI project. RESULTS: There were 154 nonreimbursable CC encounters conducted by 2 infectious diseases (ID) providers for 29 patients, ages 17 months-15 years, with complex infections. Total estimated time spent on CC was 54 hours, equivalent to at least 6 workdays. Five patients with complex social issues used 37% of total CC time. Of 129 phone events, 38% involved direct contact with families, pharmacies (13%), primary care providers (13%), and home health nursing (11%). Care coordination prevented 10 emergency room (ER) visits and 2 readmissions. Care coordination led to 16 additional, not previously scheduled subspecialist and 13 primary care visits. The OPAT providers billed for 32 clinic visits during the study period. CONCLUSIONS: Nonreimbursable CC work by OPAT providers prevented readmissions and ER visits and helped facilitate appropriate healthcare use. The value of pediatric OPAT involvement in patient care would have been underestimated based on reimbursable ID consultations and clinic visits alone.

Validation of a Parent-Reported Experience Measure of Integrated Care.

OBJECTIVES: The objectives of this study were to design and validate a survey measuring the parents' and caregivers' experiences of integration of their child's care across providers. METHODS: After review of the literature on care coordination and integration, we solicited input regarding care experiences from focus groups of families with children with chronic conditions. These data informed a 95-item pilot survey that included elements from a care integration measure designed for adult care experiences. The survey was then administered to parents of children who had had at least 1 primary care appointment and 2 specialty care appointments in the previous 12 months. Psychometric analyses were used to establish scales through exploratory factor analysis, internal consistency using Cronbach's α, test-retest reliability using Spearman's rank correlation coefficient, and known-group validity according to χ2 tests. All research activities were institutional review board approved. RESULTS: The pilot survey was completed as either a Web or mail survey by 255 participants. After excluding nonrating or screening questions and items not applicable to a large percentage of participants, 26 experience items were included in the exploratory factor analysis. The final survey contained 19 experience items in 5 scales: access, communication, family impact, care goal creation, and team functioning. Psychometric analyses supported these 5 scales. CONCLUSIONS: This project developed and validated a survey with 19 experience items, plus additional demographic and health needs and usage items. The Pediatric Integrated Care Survey can be used in quality improvement efforts to measure family-reported experience of pediatric care integration.

Perioperative Care Coordination Measurement: A Tool to Support Care Integration of Pediatric Surgical Patients.

The relationship of care coordination activities and outcomes to resource utilization and personnel costs has been evaluated for a number of pediatric medical home practices. One of the first tools designed to evaluate the activities and outcomes for pediatric care coordination is the Care Coordination Measurement Tool (CCMT). It has become widely used as an instrument for health care providers in both primary and subspecialty care settings. This tool enables the user to stratify patients based on acuity and complexity while documenting the activities and outcomes of care coordination. We tested the feasibility of adapting the CCMT to a pediatric surgical population at Boston Children's Hospital. The tool was used to assess the preoperative care coordination activities. Care coordination activities were tracked during the interval from the date the patient was scheduled for a surgical or interventional procedure through the day of the procedure. A care coordination encounter was defined as any task, whether face to face or not, supporting the development or implementation of a plan of care. Data were collected to enable analysis of 5675 care coordination encounters supporting the care provided to 3406 individual surgical cases (patients). The outcomes of care coordination, as documented by the preoperative nursing staff, included the elaboration of the care plan through patient-focused communication among specialist, facilities, perioperative team, and primary care physicians in 80.5% of cases. The average time spent on care coordination activities increased incrementally by 30 minutes with each additional care coordination encounter for a surgical case. Surgical cases with 1 care coordination encounter took an average of 35.7 minutes of preoperative care coordination, whereas those with ≥4 care coordination encounters reported an average of 121.6 minutes. We successfully adapted and implemented the CCMT for a pediatric surgical population and measured nonface-to-face, nonbillable encounters performed by perioperative nursing staff. The care coordination activities integrated into the preoperative process include elaboration of care plans and identification and remediation of discrepancies. Capturing the activities and outcomes of care coordination for preoperative care provides a framework for quality improvement and enables documentation of the value of nonface-to-face perioperative nursing encounters that comprise care coordination.

Transition care: future directions in education, health policy, and outcomes research.

All youth must transition from pediatric to adult-centered medical care. This process is especially difficult for youth with special health care needs. Many youth do not receive the age-appropriate medical care they need and are at risk during this vulnerable time. Previous research has identified barriers that may prevent effective transition, and protocols have been developed to improve the process. Health outcomes related to successful transition have yet to be fully defined. Health care transition can also be influenced by education of providers, but there are gaps in medical education at the undergraduate, graduate, and postgraduate levels. Current changes in federal health policy allow improved health care coverage, provide some new financial incentives, and test new structures for transitional care, including the evolution of accountable care organizations (ACO). Future work must test how these systems changes will affect quality of care. Finally, transition protocols exist in various medical subspecialties; however, national survey results show no improvement in transition readiness, and there are no consistent measures of what constitutes transition success. In order to advance the field of transition, research must be done to integrate transition curricula at the undergraduate, graduate, and postgraduate levels; to provide advance financial incentives and pilot the ACO model in centers providing care to youth during transition; to define outcome measures of importance to transition; and to study the effectiveness of current transition tools on improving these outcomes.

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.

Prospects for rebuilding primary care using the patient-centered medical home.

Existing research suggests that models of enhanced primary care lead to health care systems with better performance. What the research does not show is whether such an approach is feasible or likely to be effective within the U.S. health care system. Many commentators have adopted the model of the patient-centered medical home as policy shorthand to address the reinvention of primary care in the United States. We analyze potential barriers to implementing the medical home model for policy makers and practitioners. Among others, these include developing new payment models, as well as the need for up-front funding to assemble the personnel and infrastructure required by an enhanced non-visit-based primary care practice and methods to facilitate transformation of existing practices to functioning medical homes.