Care For Children With Medical Complexity Research Articles

Caregiver Values and Preferences Related to Surgical Decision-making for Children with Medical Complexity

To uncover the values and preferences of the caregivers for children with medical complexity (CMC), using the test case of surgical treatment decision-making for pediatric neuromuscular scoliosis (NMS) that will inform the future development of a decision support tool in this population. We conducted a qualitative study of semi-structured interviews of English- and Spanish-speaking caregivers of children with NMS from two geographically distinct children's hospitals. We used purposive sampling of language and treatment options selected to capture diverse experiences. Analysis was based on grounded theory with synthesized caregiver values and preferences themes. From 47 participants, we completed 41 interviews (9 in Spanish). Caregivers had a mean age of 43.2 years, were mostly White (66%), and had children with a mean age of 15.6. 64% chose surgery. The following values and preferences were important to many caregivers: reducing scoliosis-related pain, minimizing mobility limitations to optimize socio-emotional quality of life, limiting the impact of comorbidities on overall quality of life, information provided by peer support, the uncertainty of outcomes due to underlying comorbidities, and the uncertainty related to the anticipated progression of their child's scoliosis curve. Caregivers experienced immense uncertainty related to treatment outcomes due to their child's comorbidities. Caregivers of CMC may benefit from decision support that includes both values clarification exercises to help caregivers identify what of the many possible values and preferences are important to them and novel methods to communicate uncertainty in the care of CMC.

Caregivers’ perspectives on disaster preparedness and evacuation plan for children relying on home ventilators or home oxygen

Children with medical complexity (CMC) and their caregivers are particularly vulnerable to the pernicious effects of disasters. This multicenter observational investigation in Ehime Prefecture, Japan, aimed to assess caregivers' perspectives on the disaster preparedness for children relying on home ventilators or home oxygen, determine their inclinations towards evacuation, and identify their concerns regarding a disaster. Caregivers of children receiving home care with a ventilator or oxygen therapy were recruited. Participants were administered multiple-choice questions and requested to provide free-text comments about their concerns. As a result, of 99 participants, 49.5 % (N = 49) reported being well-prepared for a disaster. While 27.3 % (N = 27) stated that they would evacuate, 25.2 % (N = 25) stated never evacuate. Caregivers for totally dependent children were more likely to decline evacuation. 68.7 % (N = 68) reported never having discussed with medical professionals about disaster preparedness. 44.4 % (N = 44) reported not having a backup power supply. 66.7 % (N = 66) expressed concerns about residing in an evacuation shelter. Other concerns included power outages, inadequate resources, and a lack of feasible evacuation options. In conclusion, Many caregivers perceive that they are insufficiently prepared for a disaster. Caregivers have a diverse range of concerns about disasters. Medical professionals and other stakeholders should recognize caregivers’ difficulties and promote communications about disaster preparedness.Practice Implications.Professionals engaged in the care of CMC should acknowledge unique needs of children and their caregivers, assure them of their right to survive during a disaster, and facilitate discussions about preparedness. The viewpoints of children and their caregivers should be taken into consideration when making decisions about policy and infrastructure adjustments.

33 Evaluation of a Secure Messaging System for Children with Medical Complexity

Abstract Background The Connecting2gether (C2) platform is a secure online information-sharing tool that aims to improve care for children with medical complexity (CMC) and their families. A key feature of C2 is secure messaging which enables parents to communicate with their child’s care team members (CTMs) in a timely manner. Objectives (1) Evaluate the use of a secure messaging system, (2) Examine and compare the content of messages to email and phone calls, and (3) Explore parent and CTMs’ perceptions and experience using secure messaging as a method of communication. Design/Methods This study is a sub-study of a larger feasibility evaluation of the C2 platform. Parents of CMC were recruited from a tertiary level complex care program to use the C2 platform for 6 months. Parents could invite CTMs involved in their child’s care to register on the platform. Secure messages were extracted from C2 usage reports, and phone and email documentation from the electronic medical record. Quantitative data from C2 usage reports were analyzed using descriptive statistics. Messaging content codes were iteratively developed through review of the C2 messages. Semi-structured interviews were completed with parents and CTMs. Communication and interview data were analyzed using thematic analysis. Results 36 parents and 43 care team members, including HCPs and family members, registered on the C2 platform. Participants sent a total of 1853 messages on C2 with parents and nurse practitioners sending a mean of 33.1 and 87.4 messages, respectively. 85.5% of all C2 messages were responded to within 24 hours. Email and phone calls focused primarily on clinical concerns and medications, whereas C2 messaging focused more on education, proactive check-ins, and non-medical aspects of the child’s life (Figure 1). Four themes emerged from the participant interviews related to C2 messaging: Connection to Care Team, Efficient Communication, Clinical Uses of Secure Messaging, and Barriers to Use (Figure 2). Conclusion Overall, our study provides valuable insight into the benefits of secure messaging in the care of CMC. Secure messaging provided the opportunity for continued patient education, proactive check-ins from HCPs, and casual conversations about family and child life, which contributed to parents feeling an improved sense of connection with their child’s health care team. Secure messaging can be a beneficial additional communication method to improve communication between parents and their care team, reduce the associated burden of care coordination, and ultimately, improve the experience of care delivery.

Admitting what is needed: How the health system and society can reduce hospitalizations for children with medical complexity.

Admitting what is needed: How the health system and society can reduce hospitalizations for children with medical complexity.

Long-Term Care for Children With Medical Complexity: A Call for Data.

Long-Term Care for Children With Medical Complexity: A Call for Data.

Medication safety for children with medical complexity.

Due to advances in medical care and innovations in health technology, many children with life-limiting conditions are now living longer. These children are often referred to as 'children with medical complexity (CMC)', and they are characterized by chronic conditions, increased health care utilization, and technology dependence. Their complexity of care and inherent fragility lead to higher risk for medication errors, both in-community and in-hospital. High rates of care fragmentation, miscommunication, and polypharmacy in CMC increase opportunities for error, particularly as children transition between health care settings and practitioners. Data on the factors contributing to higher risk of medication errors in this population and how they can be effectively addressed are lacking. This practice point provides clinical guidance for health care professionals to ensure medication safety when caring for CMC, with focus on practical strategies for outpatient and inpatient care.

Randomized controlled trial evaluating a collaborative model of care for transitioning children with medical complexity from hospital to home healthcare: Study protocol

This article describes the study protocol for an evaluation of an innovative model of care that supports home health nurses (HHN) who serve children with medical complexity (CMC). CMC constitute a small proportion of children, but have very high need for health services, are hospitalized frequently, and account for significant proportion of pediatric healthcare expenditures. High-quality home health nursing services are important for CMC, but models of care of home healthcare, after discharge of CMC from the hospital, have not been tested. Our project aims are to develop, implement, and test a model of care, called ICollab, to improve home healthcare delivery for CMC. The ICollab model consists of collaboration between HHN, primary-care physicians and clinicians of the complex care program of a tertiary-care children's hospital in the care of CMC. In this randomized clinical trial, we will recruit 110 CMC discharged home on home health nursing services. The intervention group (n = 55) will receive the ICollab intervention for 6 months post-discharge from the hospital, in addition to usual care. Children in the control group (n = 55) will receive only usual care. Outcome measures will include healthcare utilization metrics (hospitalization rates, emergency room visit rates, and days to readmission), caregiver burden and caregiver satisfaction with home healthcare, HHN retention, and HHN collaboration with other healthcare providers. We hypothesize that ICollab will reduce healthcare utilization and caregiver burden, and improve caregiver satisfaction with home healthcare, increase HHN retention, and increase HHN collaboration with other healthcare providers. Results of this study have the potential to provide a critically needed evidence-base for interventions to improve the quality of healthcare delivery for CMC. This study is registered on clinicaltrials.gov (NCT03978468) and is ongoing.

14. DESIGN AND EVALUATION OF A PEDIATRIC RESIDENT COMPLEX CARE CURRICULUM

Background Despite early career physicians’ competence in caring for children with medical complexity (CMC) when acutely ill, residents often do not receive adequate training to care for CMC in the primary care setting. A recent national Delphi study identified 11 curricular gaps in the care of CMC. This study evaluates the design of a curriculum that addresses majority of these gaps. Methods Pediatric residents first watch an orientation video to learn the rotation expectations and complete an anonymous pre-rotation assessment and 4 pre-tests, one for each week's themes. Each week learners receive didactic lectures, conduct ∼ 15 patient visits per week, engage in community-based site visits, and complete writing assignments demonstrating grasp of health literacy and/or evidence-based practice guidelines. Residents complete the rotation with 4 post-tests, a post-hospital rotation assessment, and a reflection. Results The curriculum, guided by Kolb's experiential cycle, was delivered to 28 postgraduate trainees over 3 ½ years of pilot and implementation phases. Complete data were collected for 14 residents/fellows between June 2018 and November 2019. Test scores and trainee self-assessments reveal significant improvement in knowledge (26.3% vs. 99.4%), skills (41.7% vs. 100%), and self-reported behaviors (16.3% vs. 56.6%). Trainees produced 21 reflections describing changes in attitudes, 19 published blogs and 12 health care transition condition fact sheets, 8 health supervision guidelines EHR templates, and 4 portable medical summaries. Reflection statements identified 4 themes demonstrating what residents valued most from the curriculum: 1) coordination of care across disciplines including community-based resources; 2) communication with patients/families that elicits goals and fosters shared decision-making; 3) an empathic and people first approach to care; and 4) advocacy and addressing the social determinants of health. Conclusion A pediatric resident complex care curriculum addressing majority of nationally recommended topics improves trainees’ knowledge, skills, attitudes, and self-reported behaviors.

Complexity of Documentation Needs for Children With Medical Complexity: Implications for Hospital Providers.

Care coordination is a core component of pediatric complex care programs (CCPs) supporting children with medical complexity (CMC) and their families. In this study, we aim to describe the purpose and characteristics of clinical care notes used within a pediatric CCP. We conducted observations of provider-family interactions during CCP clinic visits and 5 focus groups with members of the CCP. Focus groups were recorded and transcribed. Field observation notes and focus group transcripts were subjected to qualitative content analyses. Four major themes help characterize clinical care notes: (1) Diversity of note types and functions: program staff author and use a number of unique note types shared across multiple stakeholders, including clinicians, families, and payers. (2) motivations for care note generation are different and explain how, why, and where they are created. (3) Program staff roles and configuration vary in relation to care note creation and use. (4) Sources of information for creating and updating notes are also diverse. Given the disparate information sources, integrating and maintaining up-to-date information for the child is challenging. To minimize information gaps, program staff devised unique but resource-intensive strategies, such as accompanying families during specialty clinic visits or visiting them inpatient. CMC have complex documentation needs demonstrated by a variety of professional roles, care settings, and stakeholders involved in the generation and use of notes. Multiple opportunities exist to redesign and streamline the existing notes to support the cognitive work of clinicians providing care for CMC.

Implementation of a multidisciplinary discharge videoconference for children with medical complexity: a pilot study

BackgroundThe hospital to home transition for children with medical complexity (CMC) poses many challenges, including suboptimal communication between the hospital and medical home. Our objective was to evaluate the implementation of a discharge videoconference incorporating the patient, caregiver, primary care provider (PCP), hospitalist physician, and case manager.MethodsWe evaluated implementation of this pilot intervention at a freestanding tertiary care children’s hospital using mixed methods. A discharge videoconference was conducted for hospitalized children (< 18 years old) meeting complex chronic disease (C-CD) criteria. We collected field notes and conducted surveys and semi-structured interviews. Outcomes included adoption, cost, acceptability, feasibility, and appropriateness. Adoption, cost, and acceptability were analyzed using descriptive statistics. Acceptability, feasibility, and appropriateness were summarized using thematic content analysis.ResultsAdoption: A total of 4 CMC (9% of the 44 eligible children) had discharge videoconferences conducted. Cost (in provider time): On average, videoconferences took 5 min to schedule and lasted 21.5 min. Acceptability: All hospitalists involved (n = 4) were very likely to participate again. Interviews with caregivers (n = 4) and PCPs (n = 5) demonstrated that for those participating, videoconferences were acceptable and appropriate due to benefits including development of a shared understanding, remote physical assessment by the PCP, transparency, and humanization of the care handoff, and increased PCP comfort with care of CMC. Feasibility: Barriers included internet connection quality and scheduling constraints.ConclusionsThis novel, visual approach to discharge communication for CMC had low adoption, possibly related to recruitment strategy. The videoconference posed low time burdens, and participating physicians and caregivers found them acceptable due to a variety of benefits. We identified several feasibility barriers that could be targeted in future implementation efforts.

Using Telehealth to Care for Children with Medical Complexity

Category/Date Emerging Knowledge for Clinical Practice Podium Presentations focusing on the Research Agenda Priority of Pediatric Research: Chronic Illness, Presented at NAPNAP's 40th National Conference on Pediatric Health Care, March 8, 2019, New Orleans, LA. Background Children with medical complexity (CMC) are high utilizers of health care services. Cost and logistics of transportation may result in delays in seeking care, or seeking care after hours in an emergency department (ED). Telehealth encounters may provide an important means to address unmet health needs, prevent ED and hospital visits, reduce costs, and improve care outcomes for CMC. A pediatric nurse practitioner (PNP) is well-situated to use technology to help families meet goals of keeping their child at home. Objectives The purpose of the study was to evaluate the role of a PNP in use of a telehealth device in the care of CMC within an established pediatric complex care program. Specific aims were to assess the feasibility of telehealth in the home environment; evaluate its usability in transmitting real time data; and compare its impact on patient management. Methods This IRB approved, industry sponsored pilot study was conducted at a single center and employed a randomized clinical trial design. Participants were randomized 1.5:1 with stratification based on tracheostomy status to either a control group that received usual care or an intervention group that was given a telehealth device for use in the home at the discretion of a provider. All subjects were followed for 4 months (1 technical month, 3 study months) and had 24/7 access to the program providers, which included a PNP and a physician. Data collected included provider encounter surveys; family satisfaction surveys; and resource utilization type, purpose, and outcomes. Results Twenty-four patients were enrolled in the study: 9 controls,15 in the intervention group. In the intervention group, telehealth visits were attempted in 73 encounters. Providers reported successful device connectivity 92% of the time. Provider surveys indicated that the majority of encounters focused on respiratory/ENT complaints (66.7%). Based on provider survey results, usability for all device peripherals was acceptable (>90%), except for the otoscope (59%), which was related to patient refusal or parental discomfort. Families and providers expressed overall satisfaction with the device. Device use resulted in management changes such as close follow up by the PNP at home for a ventilated patient with a respiratory illness. Hospitalization rate decreased in the intervention group as compared to the control group (0.77 versus 1.14 PICU days/patient-month). Calculated cost rates (direct cost of encounter multiplied by the visit rate) showed a $44,751.65 ($9,425 per patient) cost savings for the intervention group. Conclusions Despite a small sample size and short study period, this pilot study demonstrated the feasibility of a PNP led telehealth program and that use of the telehealth device showed an overall benefit not only improving patient related outcomes but reducing cost of care. This study provides a foundation for examining the value of telehealth in the homes of other populations with special health care needs.

It's About Time: Rapid Implementation of a Hub-and-Spoke Care Delivery Model for Tertiary-Integrated Complex Care Services in a Northern Ontario Community.

Children with medical complexity (CMC) in rural and northern communities have more difficulty accessing subspecialty health providers than those in urban centres. This article describes an alignment cascade in which leaders engaged peers and staff to rapidly roll out the implementation of a sustainably designed complex care model, integrated in the Champlain Complex Care Program and delivered in Timmins, Ontario. The Provincial Council for Maternal and Child Health's Complex Care for Kids Ontario (CCKO) strategy supports the implementation and expansion of a hub-and-spoke model of interprofessional complex care for CMC and their families. A nurse practitioner is the primary point of contact for the family and oversees coordination and integration of care; regional CCKO programs are committed to building capacity to provide safe, high-quality care for CMC in communities closer to their homes.

Caregiver and Health Care Provider Perspectives on Cloud-Based Shared Care Plans for Children With Medical Complexity.

Shared care plans play an essential role in coordinating care across health care providers and settings for children with medical complexity (CMC). However, existing care plans often lack shared ownership, are out-of-date, and lack universal accessibility. In this study, we aimed to establish requirements for shared care plans to meet the information needs of caregivers and providers and to mitigate current information barriers when caring for CMC. We followed a user-centered design methodology and conducted in-depth semistructured interviews with caregivers and providers of CMC who receive care at a tertiary care children's hospital. We applied inductive, thematic analysis to identify salient themes. Analysis occurred concurrently with data collection; therefore, the interview guide was iteratively revised as new questions and themes emerged. Interviews were conducted with 17 caregivers and 22 providers. On the basis of participant perspectives, we identified 4 requirements for shared care plans that would help meet information needs and mitigate current information barriers when caring for CMC. These requirements included the following: (1) supporting the accessibility of care plans from multiple locations (eg, cloud-based) and from multiple devices, with alert and search features; (2) ensuring the organization is tailored to the specific user; (3) including collaborative functionality such as real-time, multiuser content management and secure messaging; and (4) storing care plans on a secure platform with caregiver-controlled permission settings. Although further studies are needed to understand the optimal design and implementation strategies, shared care plans that meet these specified requirements could mitigate perceived information barriers and improve care for CMC.

An innovative health-care delivery model for children with medical complexity.

Children with medical complexity (CMC) account for a disproportionate share of pediatric health-care utilization and cost that is largely attributable to long hospitalizations, frequent hospital readmissions, and high use of emergency departments. In response, the Centers for Medicare and Medicaid Services Health Care Innovation Center supports the development and testing of innovative health-care payment and service delivery models. The purpose of this article is to describe the CMS-funded coordinated health care for complex kids (CHECK) program, an innovative system of health-care delivery that provides improved, comprehensive, and well-coordinated services to CMC. The CHECK program uses a combination of high-tech and low-tech interventions to connect patients, stakeholders, and providers. It is anticipated that the investment in additional support services to CMC will result in improved quality of care that leads to a reduction in unnecessary inpatient hospitalizations, readmissions, and emergency department visits and a total cost savings. The CHECK program has the potential to inform future cost-effective health-care models aimed at improving the quality of life and care for CMC and their families.

Respiratory Care Considerations for Children with Medical Complexity.

Children with medical complexity (CMC) are a growing population of diagnostically heterogeneous children characterized by chronic conditions affecting multiple organ systems, the use of medical technology at home as well as intensive healthcare service utilization. Many of these children will experience either a respiratory-related complication and/or they will become established on respiratory technology at home during their care trajectory. Therefore, healthcare providers need to be familiar with the respiratory related complications commonly experienced by CMC as well as the indications, technical and safety considerations and potential complications that may arise when caring for CMC using respiratory technology at home. This review will outline the most common respiratory disease manifestations experienced by CMC, and discuss various respiratory-related treatment options that can be considered, including tracheostomy, invasive and non-invasive ventilation, as well as airway clearance techniques. The caregiver requirements associated with caring for CMC using respiratory technology at home will also be reviewed.

An Exploration of Care Mapping Among Families of Children with Medical Complexity (CMC)

Abstract BACKGROUND: A care map is a visual diagram that illustrates all of the resources needed to support a child with medical complexity, providing a contextualized view of the child in a broader health network. It is believed that health care providers (HCPs) can utilize care maps to enable child and family centered care by helping families prioritize and coordinate their health needs. While the popularity of care maps has been growing, there is a paucity of research on their clinical usefulness. OBJECTIVES: The objective of this study is to explore how care maps are constructed by parents, what they mean for parents and HCPs, and how they can be applied in a clinical setting. DESIGN/METHODS: This is a qualitative study informed by a grounded theory approach. Theoretical sampling of parents and HCPs of CMC was utilized. Fifteen care map training sessions and forty-five semi-structured interviews with parents and HCPs of CMC were conducted. The data was coded and analyzed iteratively for predominant themes and emerging theory. RESULTS: Both HCPs and parents strongly identified the care map [Figure 1] as a valuable tool in the care of CMC. Data analysis revealed key themes that demonstrated how and why care maps are useful. Care maps allow HCPs to recognize family experiences, identify parental goals of care and promote improved care coordination and communication. Parents described creating care maps as an empowering and therapeutic process that helped them to organize and communicate their complex interplay of supports. Both parents and HCPs acknowledged challenges associated with care mapping including the ability of parents to create a care map as well as the HCPs ability to independently interpret the care map’s meaning. CONCLUSION: Care maps are a useful communication and coordination tool to demonstrate a contextualized view of a family’s narrative of their experience caring for a CMC. Findings may inform a model of how to utilize care maps in clinical practice.

Caring for Children with Medical Complexity: Challenges and Educational Opportunities Identified By Pediatric Residents

Abstract Objective High-quality care for children with medical complexity (CMC) is in its infancy. Residents have the opportunity to view care for CMC with a fresh perspective that is informed by their work across diverse health care settings and significant time spent at the bedside. This study aimed to identify the challenges and potential solutions for complex care delivery and education from their perspectives. Methods We conducted three 60-minute focus groups with a purposeful sample of residents and recent graduates at a US tertiary-care medical center. Data were transcribed verbatim, and themes were identified using an iterative approach and modified grounded theory. Results Sixteen participants identified 4 major challenges to caring for CMC: 1) lack of care coordination; 2) complex technology management; 3) patients' pervasive psychosocial needs; and 4) lack of effective health care provider training. Participants identified 3 solutions: 1) greater integration of primary care providers; 2) attention to psychosocial needs through shared decision making; and 3) integration of longitudinal patient relationships into provider training. We found that residents who experienced longitudinal relationships with CMC felt more efficacious and better equipped to handle challenges of caring for CMC as a result of their broader understanding of patients' priorities and of their role as providers. Conclusions Residents recognize important challenges and offer thoughtful solutions to caring for CMC. Although multiple solutions exist, formal integration of longitudinal patient experiences into residency training may better prepare residents to understand patient priorities and identify when their own attitudinal changes can guide them into more efficacious roles as providers.

Continuing education needs of pediatricians across diverse specialties caring for children with medical complexity.

Care for children with medical complexity (CMC) relies on pediatricians who often are ill equipped, but striving to provide high quality care. We performed a needs assessment of pediatricians across diverse subspecialties at a tertiary academic US children's hospital about their continuing education needs regarding the care of CMC. Eighteen pediatricians from diverse subspecialties were asked to complete an online anonymous open-ended survey. Data were analyzed using modified grounded theory. The response rate was 89% (n = 16). Of participants, 31.2% (n = 5) were general pediatricians, 18.7% (n = 3) were hospitalists, and 50% (n = 8) were pediatric subspecialists. Pediatricians recognized the need for skills in care coordination, giving bad news, working in interprofessional teams, and setting goals of care with patients. Practicing pediatricians need skills to improve care for CMC. Strategically incorporating basic palliative care education may fill an important training need across diverse pediatric specialties.