Usability And Feasibility of an in-Home Remote Exam Device in Children with Medical Complexity During the COVID-19 Pandemic.

Background: Children with medical complexity (CMC) account for high health care utilization. Telemedicine holds significant potential in CMC, as it allows a provider to engage with CMC in their home environment and can alleviate both financial and transportation burdens. Remote exam devices that enable the performance of a physical exam could expand the ability of providers to clinically assess CMC during a telemedicine visit. In this pilot study, our goal was to develop a process for integrating an in-home remote exam device into a complex care clinic during the COVID-19 pandemic and evaluate the usability and feasibility of this device. Methods: The remote exam device was distributed to caregivers of CMC cared for at a complex care outpatient center. Using deliberate practice framework, our onboarding process provided opportunities for caregivers and providers to learn how to utilize the device. Surveys examining usability and feasibility were administered to both caregivers and providers after each telemedicine encounter. Results: A total of 43 caregivers participated in the onboarding process, which included a total of 83 practice visits. The remote exam device was rated as having excellent usability by caregivers; however, providers rated the device as having lower usability. Feasibility was notable for technology issues contributing to 15% of encounters being cancelled or ending early. Conclusions: The remote exam device was successfully integrated into a complex care clinic. Data from this pilot study supports the usability and feasibility of deploying a remote exam device across a telemedicine platform in a busy and complex outpatient academic practice.

Establishing Goals of Care in Serious and Complex Pediatric Illness.

An increasing number of children are living for months and years with serious/complex illness characterized by long-term prognostic uncertainty, intensive interactions with medical systems, functional limitations, and often home medical technologies that shape the child's and family's quality of life. These families face many medical decision points that require intentional and iterative discussions about goals of care. Threats to cohesive goals of care include prognostic uncertainty, diffusion of medical responsibility, individual family context, and blended goals of care. This article offers strategies for addressing each of these challenges.

Palliative Care Needs Assessment for Pediatric Complex Care Providers.

CONTEXT: Children with medical complexity (CMC) are often cared for by both complex care and palliative care pediatric teams. No prior research has investigated the relationship between these two disciplines. OBJECTIVES: The purpose of this article is to investigate challenges that complex care programs face in caring for children with medical complexity (CMC), as well as to explore whether identified challenges could be met through collaboration with pediatric palliative care or additional training for complex care teams. METHODS: Medical providers who self-identified as providing clinical care to children with medical complexity were asked to complete an online anonymous survey. Subjects were recruited through a Complex Care listerv. Data were analyzed using descriptive statistics. RESULTS: 85 subjects completed the survey, of whom 87.1% (n=74) were physicians, and 12.0% (n=11) were nurse practitioners. Subjects reported several challenges in caring for CMC, including symptom management, establishing goals of care, advance care planning, and coordination of care. A majority of subjects reported benefitting from palliative care consultative assistance in each subject area. Most subjects described their relationship with palliative care as a close partnership with frequent overlap. CONCLUSIONS: The evolving field of pediatric complex care is associated with an array of challenges in caring for CMC. Many of these challenges include competency areas where palliative care providers receive concerted training. Our research suggests greater palliative care involvement in the CMC population can benefit complex care teams and patients, given the expertise palliative providers can bring to the population and the discipline of complex care.

Accuracy of the Exeter Hospitalizations-Office Visits-Medical Conditions-Extra Care-Social Concerns Index for Identifying Children With Complex Chronic Medical Conditions in the Clinical Setting.

OBJECTIVE: Our objective was to determine the accuracy of a point-of-care instrument, the Hospitalizations-Office Visits-Medical Conditions-Extra Care-Social Concerns (HOMES) instrument, in identifying patients with complex chronic conditions (CCCs) compared to an algorithm used to identify patients with CCCs within large administrative data sets. METHODS: We compared the HOMES to Feudtner's CCCs classification system. Using administrative algorithms, we categorized primary care patients at a children's hospital into 3 categories: no chronic conditions, non-complex chronic conditions, and CCCs. We randomly selected 100 patients from each category. HOMES scoring was completed for each patient. We performed an optimal cut-point analysis on 80% of the sample to determine which total HOMES score best identified children with ≥1 CCC and ≥2 CCCs. Using the optimal cut points and the remaining 20% of the study population, we determined the odds and area under the curve (AUC) of having ≥1 CCC and ≥2 CCCs. RESULTS: The median (interquartile range [IQR]) age was 4 (IQR: 0, 8). Using optimal cut points of ≥7 for ≥1 CCC and ≥11 for ≥2 CCCs, the odds of having ≥1 CCC was 19 times higher than lower scores (odds ratio [OR] 19.1 [95% confidence interval [CI]: 9.75, 37.5]) and of having ≥2 CCCs was 32 times higher (OR 32.3 [95% CI: 12.9, 50.6]). The AUCs were 0.76 for ≥1 CCC (sensitivity 0.82, specificity 0.80) and 0.74 for ≥2 CCCs (sensitivity 0.92, specificity 0.74). CONCLUSIONS: The HOMES accurately identified patients with CCCs.

A Qualitative Study of Family Caregiver Perceptions of High-Quality Care at a Pediatric Complex Care Center.

OBJECTIVE: Pediatric complex care centers are an increasingly common approach to address the needs of children with medical complexity (CMC). We sought to better understand CMC caregivers' perceptions of what constitutes high-quality care at a complex care center. METHODS: We conducted a cross-sectional qualitative study of family caregivers of CMC receiving care at a pediatric complex care center situated within a tertiary-care children's hospital. In-depth, semistructured interviews focused on caregivers' general experiences at the clinic, positive and negative experiences related to core components of the pediatric medical home, and recommendations for improvements. We thematically analyzed transcripts through a mixed inductive and deductive approach, using constant comparative methodology, with the pediatric medical home model as an organizing framework. RESULTS: We conducted interviews with 20 participants (18 [90%] biological parents; 19 [95%] female; mean age 39 years) in outpatient settings. Caregivers described 2 major themes: 1) the value of having a clinician "quarterback" who is in-charge of their child's care and caregivers' go-to for questions and concerns, and 2) wanting clinicians who are personally invested in and willing to "go above and beyond" for their child. Participants discussed how and which components of the medical home model enable CMC clinicians to meet these needs. CONCLUSIONS: Family caregivers of CMC want clinicians who take responsibility for managing their child's overall care and demonstrate personal commitment to ensuring their child's well-being. Multiple aspects of the medical home framework, rather than care coordination alone, help meet caregivers' perceptions of high-quality complex care.

Pediatric care coordination and risk tiering: Moving beyond claims data.

PURPOSE: The goal of this study was to evaluate the performance of a pediatric stratification tool that incorporates health and non-medical determinants to identify children and youth with special health care needs (CYSHCN) patients according to increasing levels of complexity and compare this method to existing tools for pediatric populations. METHODS: This retrospective cohort study examined pediatric patients aged 0 to 21 years who received care at our institution between 2012 and 2015. We used the St. Luke's Children's Acuity Tool (SLCAT) to evaluate mean differences in dollars billed, number of encounters, and number of problems on the problem list and compared the SLCAT to the Pediatric Chronic Conditions Classification System version2 (CCCv2). RESULTS: Results indicate that the SLCAT assigned pediatric patients into levels reflective of resource utilization and found that children with highly complex chronic conditions had significantly higher utilization than those with mild and/or moderate complex conditions. The SLCAT found 515 patients not identified by the CCCv2. Nearly half of those patients had a mental/behavioral health diagnosis. CONCLUSIONS: The findings of this study provide evidence that a tiered classification model that incorporates all aspects of a child's care may result in more accurate identification of CYSHCN. This would allow for primary care provider and care coordination teams to match patients and families with the appropriate amount and type of care coordination services.

Use of Nasal Non-Invasive Ventilation with a RAM Cannula in the Outpatient Home Setting.

BACKGROUND: Nasal non-invasive-ventilation (Nasal NIV) is a mode of ventilatory support providing positive pressure to patients via a nasal interface. The RAM Cannula is an oxygen delivery device that can be used as an alternative approach to deliver positive pressure. Together they have been successfully used to provide respiratory support in neonatal in-patient settings. OBJECTIVE: To describe the outpatient use of Nasal NIV/RAM Cannula as a feasible alternative for home respiratory support in children with chronic respiratory failure. METHODS: We performed a retrospective case series of 18 children (4 months to 19 years old) using the Nasal NIV/RAM Cannula in the Pediatric Pulmonary Clinic at the McGovern Medical School, UTHealth (2014-16). Consideration for Nasal NIV/RAM Cannula utilization included: inability to wean-off in-patient respiratory support, comfort for dyspnea, intolerability of conventional mask interfaces and tracheostomy avoidance. RESULTS: Average age was 7 years. 50% were Caucasian, 38% African-American and 11% Hispanics. Pulmonary disorders included: chest wall weakness (38%), central control abnormalities (33%), obstructive lung disease (16%) and restrictive lung disease (11%). Indications for Nasal NIV/RAM Cannula initiation included: CPAP/BPAP masks intolerability (11%), dyspnea secondary to chest wall weakness (38%) and tracheostomy avoidance (50%). Average length of use of Nasal NIV/RAM Cannula was 8.4 months. Successful implementation of Nasal NIV/Ram Cannula was 94%. One patient required a tracheostomy following the use of Nasal NIV/RAM Cannula. Significant decrease in arterial PaCO2 pre and post Nasal NIV/RAM cannula initiation was notable (p=0.001). CONCLUSION: Outpatient use of Nasal NIV/RAM Cannula may prove to be a feasible and save treatment alternative for children with chronic respiratory failure, chest wall weakness, dyspnea and traditional nasal/face mask intolerance to avoid tracheostomy.