Care Models and Discharge Services for Children With Medical Complexity Free

This was a survey-based cross-sectional study to quantify the availability and utilization of care models and discharge services for CMC on hospital medicine teams. It was electronically distributed in fall 2022 to the division director of pediatric hospital medicine at hospitals contributing to the Pediatric Health Information System (PHIS) database within the Children’s Hospital Association. The Children’s Hospital Association brings together >200 pediatric hospitals for collaboration on a variety of topics, and PHIS is a database of a subset of 48 children’s hospitals’ clinical and research utilization data. Division directors were asked to complete the survey or identify a representative at their institution familiar with services available for CMC. Each participating hospital received a unique survey link that allowed respondents to access and re-access the survey until final submission. A 20-dollar Target gift card was offered as an incentive for responders. Follow-up queries were sent in 2-week intervals to nonrespondents over a 4-month period. This study was approved by the Children’s National Hospital Institutional Review Board.

This survey was conducted within REDCap (Supplemental Fig 3).¹⁵ A literature review was done to ensure that the survey captured existing care models.^6,16  The survey was piloted by 2 survey design experts and 3 representatives from institutions with varied complex care models. Feedback was incorporated and a consensus was reached before distribution. The final survey had 15 to 61 questions based on branching logic.

Respondents were asked to identify all care models present at their institution for CMC, including a dedicated inpatient team, an outpatient team, a consult team, a continuity inpatient provider, a complex care team that provides services in both the outpatient and inpatient setting, or no dedicated care team. Regardless of the care teams present, respondents were then asked to rate the frequency of use of discharge services for CMC in the domains of medication, durable medical equipment (DME), communication, and discharge aids typical at their institution. A 5-point Likert scale was used for the frequency of discharge services (never, rarely, sometimes, most of the time, almost always).

Hospital and patient population characteristics of responding and nonresponding hospitals were gathered from the PHIS database and compared by using Wilcoxon rank tests for continuous variables and χ-square tests for categorical variables. Descriptive statistics of central tendency and frequency distributions were used to summarize responses. Discharge service responses were grouped into low-frequency use (never and rarely), medium-frequency use (sometimes), and high-frequency use (most of the time and almost always). All analyses were performed by using SAS v.9.4 (SAS Institute, Cary, NC), with P < .05 being considered statistically significant.

Representatives from 35 of 48 hospitals responded. Two of the surveys were incomplete and were not included in the analysis. One survey had only 1 incomplete answer and was included in the analysis. A total of 33 hospitals were included in the analysis (69% response rate).

Table 1 reveals the hospital demographics of responding and nonresponding hospitals. There were no statistical differences between the responding and nonresponding hospitals for either hospital-level characteristics or the complex care populations. The most common complex care conditions (CCCs) in respondent hospitals were hematologic or immunologic (11.0%), neuromuscular (9.1%), and cardiovascular (8.5%).

There was a large variation in the type and number of care models for CMC present at responding institutions (Fig 1). The majority (79%) of institutions had at least 1 care model dedicated to CMC. Approximately one-half (48%) had only 1 care model dedicated to CMC, whereas 30% had 2 or more care models, and the remaining 20% had no dedicated care models for CMC. Of the institutions with >1 care model, there were 6 different combinations present.

Two-thirds of the institutions had a dedicated outpatient care model dedicated to CMC. For 12 of these 22 institutions, this was their only care model dedicated to CMC. All institutions that had 2 or more care models had a dedicated outpatient team.

Fourteen (42%) institutions provided some form of dedicated care for CMC in the inpatient setting. Most of these had a dedicated inpatient team. Nine (27%) institutions had a consult team, 5 (15%) had a complex care team that provides both inpatient and outpatient care, and 2 (6%) had a continuity inpatient provider.

The frequency of discharge services availability and use varied greatly among institutions (Fig 2). Discharge service responses were grouped into low-frequency use (never and rarely), medium-frequency use (sometimes), and high-frequency use (most of the time and almost always).

High-frequency discharge practices included DME delivery (76%), medication delivery (67%), communication with an outpatient provider before discharge (70%), and care coordinator use (67%). Communication with an outpatient team most often occurred via an automated fax or e-mail of the discharge summary (82%) or directed e-mail or phone call to the primary care provider (PCP; 70%). This communication was most often received by the PCP (90%) or subspecialty providers (32%). When a care coordinator was used, they were most often a case manager (85%), followed by nurse navigator (40%), parent navigator (3%), or social worker (3%).

Low-frequency discharge practices included the use of a structured handoff tool for outpatient communication (76%), discharge checklists (52%), personalized access plans (58%), and inpatient team follow-up with family after discharge (52%). When care access plans (a list of patient’s active outpatient providers with their contact information) were used, standardized templates were used only 42% of the time. These were accessible primarily via the EHR (88%), on paper (25%), and via the portal (25%). When inpatient follow-up was completed, it was most often via phone call (80%) or telemedicine (20%).

Our survey revealed the nature and prevalence of care models and discharge services for CMC at select children’s hospitals participating in the PHIS network. Overall, we found a large variability in the presence and type of care models dedicated to CMC, as well as the use of discharge services. Specifically, the variability in care model presence, discharge services care coordination services, and predischarge family education are notable.

Despite caring for a complex patient population, many pediatric hospitals reported only 1 or even no dedicated care models for these children. When present, outpatient teams were the most prevalent. Some studies have revealed that a dedicated medical home involving the PCP, subspecialty providers, and care coordination for CMC improves care, in terms of a decreasing number of hospitalizations and ED visits, a costly component of caring for CMC.^7,17  This decrease in health care utilization may partially explain why outpatient care models are the most prevalent. Multidisciplinary inpatient care models for CMC have been explored in the literature; however, findings remain limited in regard to generalizability and the decrease in utilization.^18,19  The variation present in inpatient care models likely reflects a paucity of clear or specific guidelines available on hospital care for CMC. Hopefully, this area of research will continue to expand, given the data regarding the cost of hospitalization, the disruption and difficulty frequent hospitalization presents for families, and the overall increased rate of health care utilization in this patient population.³ 

Most programs reported the use of a care coordinator and ensured communication with the outpatient team at the time of discharge. Fewer programs communicated with the outpatient team at the time of admission or used a multidisciplinary care coordination meeting before discharge. The authors of one previous study noted that multidisciplinary care coordination is essential for improving the health of CMC; however, the intensive staff time and cost required for this may explain some of the variation seen in our study.²⁰ 

Although most institutions discharged patients with medications in hand, fewer programs ensured that patients and families have had pharmacy medication teaching before discharge. It is possible that if CMC are discharged with many of the same medications they were previously taking at home, providers may be less inclined to ensure dedicated pharmacy teaching. Alternatively, there may not be enough staff resources to accommodate the need. Regardless, past studies have revealed that caregivers of CMC experience challenges with medication and desire high-quality education.^21,22 

As with medications, almost all programs ensured that DME was delivered before discharge. This makes sense because it is often critical for the patient and includes equipment such as airway and feeding supplies.²³  Despite this, there are still many programs that reported they do not ensure DME teaching before discharge. This heterogeneity in discharge practice has been reported for children with home mechanical ventilation.²⁴  This may be because DME companies themselves often provide education for families, especially for equipment that is delivered to the home and not to the bedside. Additionally, this may be due to the availability of teaching resources or provider perception of caregiver reliability and confidence, especially if the child was previously at home with similar supplies.

Our study also revealed a large variation in the use of a standardized handoff to the outpatient provider at discharge. Past studies have revealed that the documentation of discharge communication with the PCP for CMC is low.^25,26  The evidence for a standardized handoff is well-known in the pediatric literature during hospitalization to prevent adverse events and medication errors.²⁷  Given the complexity of the patient population in this study, a greater evaluation of the utility of a standardized handoff for CMC is warranted.²⁸ 

In addition, the consistent use of standardized discharge aids, such as a care escalation plan, was low among all programs. Despite the likelihood that these children are taking a significant number of medications, have multiple outpatient providers, and may require rescue medications at home for events such as seizures, respiratory distress, or feeding intolerance, most programs did not ensure that CMC have individualized medication or care escalation plans. A previous study has revealed that the development of dynamic care teams and individualized access plans care plans decreased emergency department visits and hospitalizations.^7,17  The authors of existing literature also recommend the use of standardized templates to aid in the creation of individual care plans to optimize care.²⁹ 

With this study, we highlight potential gaps in care for CMC, including limited inpatient care models, a lack of structured handoff tools and discharge checklists, and variability in teaching and care escalation plans. The authors of past work highlight caregivers’ desire for providers to be familiar with their child, opportunities to practice home skills, and contingency planning to support transitions from hospital to home.³⁰  Future work is needed to examine the relationship between various care model presence and discharge services use with such patient-centered outcomes, the experience of families and providers, and health care utilization. Additionally, examining the relationship between care model structure and the frequency of discharge service use could be helpful for hospital administrators who want to start or expand on the current care model structure for CMC. As our study reveals, there is a large variability in practice and these additional studies could be helpful for the development of guidelines for the care of CMC.

Our study has limitations. First, as with many survey formats, follow-up questions to provide or seek clarification for survey responses were not available and may be a consideration in future work. Second, we surveyed only 1 individual from each institution, although collaboration was encouraged. Our survey responses may not have captured all services provided by a particular hospital. However, we requested that individuals with experience caring for CMC complete the survey to mitigate this limitation. Third, the survey was administered to the hospital medicine teams, so responses may not reflect the care practices in subspecialty teams, for example, neurology. Additionally, selection bias may have influenced participation in the survey. Finally, because only PHIS-contributing hospitals were surveyed, these data may be more reflective of highly resourced freestanding children’s hospitals. Surveying only PHIS hospitals also limited the number of survey responses and may limit the power of our statistical analysis in Table 1. Despite these limitations, our survey had an excellent response rate, representing a large sample of children’s hospitals providing care for CMC.

With this study, we provided a summary of current care models available for CMC, as well as a description of the discharge services that are available. Future work to correlate the presence of care models and discharge service use with both patient-centered outcomes and health care utilization is needed to improve the care of CMC.