Pediatric Hospitalists’ Perspectives on the Care of Children With Medical Complexity

Discussion

Our study shows that pediatric hospitalists perceive multiple barriers to caring for CMC in the inpatient setting. Pediatric hospitalists who care for CMC in the inpatient setting cite issues regarding time constraints, lack of community resources on discharge, and lack of evidence-based guidelines as the most notable barriers. Institutions that wish to provide excellent quality of care for these patients can use this information to investigate the effect these barriers have on patient outcomes and design models of care that mitigate these challenges.

The two most highly cited barriers to caring for CMC involved the lack of time and the time-intensive families of CMC. In the inpatient setting, this may be because the care coordination involves the highly rigorous tasks of not only managing medical issues, but also (1) coordinating and organizing care from subspecialists to avoid duplication of services, (2) sharing information between families and other members of the health care team, (3) care planning with particular attention to minimizing errors, (4) discharge planning including ensuring safety and accessibility for technology-dependent patients, and (5) educating families.¹³ A possible solution to address time-intensive care coordination needs for CMC include the formation of multidisciplinary teams that conduct family-centered rounds to allow all involved in the care of the complex child, including family, medical staff, and bedside nurses to be included in the decision-making.^17–21 Families are the pediatric patient’s main source of support, and offer the health care team valuable information unique to their child which helps in decision-making and may positively affect health outcomes.¹⁷ Through meticulous family-centered care coordination, the hospitalist may be able to spend more time at the bedside with the families and patients to make appropriate medical decisions regarding the care of the child. Comprehensive case management support can also address the time needed to properly care for CMCs in the hospital setting. For example, the Pediatric Alliance for Coordinated Care has designated a pediatric nurse practitioner to act as a case manager for CMC in the outpatient setting, with “indications of improved health.”⁴ Although there is no literature, to our knowledge, on the use of physician extenders in the care of CMC in the hospital setting, designating a health professional specifically to coordinate care could save much of the physicians’ time so that more time is spent at the bedside with the patients and their families.

To address the perception of lack of support outside the hospital setting including inadequate postdischarge resources, lack of rehabilitation services, subspecialty support, institutional support, ancillary services and lack of engagement from the primary care provider (PCP), pediatric hospitalists can form partnerships with community resources and PCPs to improve the transition of CMCs from the inpatient to outpatient setting. Some of these barriers would require a change not only in culture (institutional support), but also in available resources and infrastructure (rehabilitation services). Both top-down and grass roots efforts may address these barriers to provide the necessary resources to care for CMC. Seamless transitions are imperative for these patients, because their level of complexity places them at risk for errors in care.¹³ Recent literature has addressed the importance of transitions in fragile populations; one study reported that elderly, frail patients are twice as likely to report problems after discharge when their PCP was not aware of the hospitalization²² and another showed that patients without “timely” PCP follow-up were more likely to be readmitted.²³ More than half of the pediatric hospitalists who responded perceived the lack of PCP engagement in the care of CMC to be an important barrier. Conversely, a study on various physicians’ attitudes regarding pediatric hospitalists showed that more than half of the responding PCPs believed the hospitalist model would impair communication with the PCP, and two-thirds believed that the PCP was the best physician to provide inpatient care, even though most were less comfortable with inpatient care than outpatient care.²⁴ Communication with the patients’ PCPs is essential to a safe, seamless transition of the CMC between inpatient and outpatient settings and serves as a way to engage the PCP.

Another important barrier noted by the respondents included the lack of evidence-based guidelines for CMCs. Although experts agree that the CMC population is important and needs special attention, evidence regarding appropriate management strategies is scarce, in large part because of the heterogeneity of the CMC population. The diversity of the group as a whole leads to small sample sizes and results that are rarely generalizable¹³ into evidence-based guidelines. If centers that care for CMC could collaborate in research trials they may be able to determine the best ways to care for these patients. Srivastava and colleagues¹³ summarized the common themes in the care of the hospitalized CMC including nutritional needs, functional limitations, multidisciplinary coordination, enterostomy tubes, tracheostomy and other airway devices, central lines, and the presence of cerebrospinal fluid shunts. These themes may need to be further explored to construct evidence-based management guidelines that can standardize and hopefully improve the care of hospitalized CMC.

The remaining barriers perceived by pediatric hospitalists which were addressed in the survey, such as the patient’s level of disability, the stakeholders’ sense of futility, and the physician’s comfort level and residency training may be addressed with education at the graduate medical education and the faculty development levels. Although a discussion as to the ways this could be done is beyond the scope of this study, we believe exploring these barriers in a future study would be important to develop sustainable inpatient programs that care for CMC.

To our knowledge, this is the first study addressing pediatric hospitalists’ opinions on the best way to deliver care to CMC. Our survey found that the majority of pediatric hospitalists perceive that CMC are best cared for by an inpatient service dedicated to CMC or a consultation team that can assist the primary team. However, most respondents (91%) actually take care of CMC in models where CMC and non-CMC patients are on the same service. Only 10% of respondents staff an inpatient service dedicated to CMC. There was no difference among respondents in the type of model they perceived as the best to care for CMC when adjusted for the actual model used by the respondents. The reasons for the discrepancy between actual practice and the respondents’ perceptions as to the preferred inpatient health care delivery model are unclear. The paucity of institutions with a dedicated inpatient CMC service may be related to the barriers discussed earlier, including financial constraints and lack of personnel. It stands to reason that a dedicated CMC service may positively affect the time-constraint barrier perceived by hospitalists by allowing pooling of resources such as case management support and communication with subspecialists. However, in our survey, these questions were independent of each other, therefore we cannot make inferences regarding their relationship or whether the hospitalists perceived that the time constraint barrier would be addressed specifically by a dedicated CMC service. Further study is necessary to determine the relationship between these two important variables.

While the outpatient medical home model has been evaluated in the literature, very few studies have addressed the best ways to deliver care to CMC in the hospital setting. Bekmezian and colleagues¹⁵ reported that their staff-only pediatric hospitalists care of Gastroenterology or Hematology-Oncology patients resulted in decreased length of stay and cost. Their study focused on two populations that are relatively homogeneous and may not be applicable to settings in which residents participate in the care of CMC. Berman et al¹⁶ demonstrated a shorter length of stay in children with special health care needs who were enrolled in a hospital-based comprehensive primary care clinic where the clinic physician cared for those patients when they were hospitalized and did not require intensive care. This model would likely provide the most seamless transitions in and out of the hospital for CMC, yet the current trend is for hospitalists to take care of both CMC and non-CMC patients who are admitted.

Our study has several limitations. First, the survey was sent to a Listserv made up of primarily pediatric hospitalists and we are unsure how representative the sample is of the pediatric hospitalist community across the country because 75% of respondents held an academic appointment (a similar demographic finding in a recent Pediatric Research in Inpatient Settings study survey¹⁸). Second, the response rate was low (approximately 20%) and we cannot determine how many people actually received the survey. Third, the list of barriers was not exhaustive. There may be important barriers that were not included in the survey. Finally, the survey was sent by email to the SOHM and Listserv membership, and the survey instrument was coadministered with a survey on pediatric hospitalist career satisfaction. The presence of two surveys may have affected the response rate. For example, not all respondents answered the demographic questions. Although the reasons for this are not clear, it could have been a sign of fatigue in a long series of questions. Also, the difference between the percentage of female members of AAP-SOHM (54%) and our respondents (70%) may also indicate an element of self-selection bias, though the relationship of gender with this specific topic is unclear.

We also realize many of the survey questions were subject to interpretation by the respondents. For example, the questions regarding different stakeholders’ “sense of futility” was meant to address whether respondents perceived their own, other physicians’, or families’ sense of futility as a barrier to providing care for a child whose chronic conditions would not improve. The responses appear to indicate that most hospitalists were more concerned with other physicians’ sense of futility in caring for CMC, not their own or the families’ sense of futility. By “your comfort level with medically complicated patients” we meant to ask physicians how comfortable they felt when providing care to CMC specifically and by “your training during residency” we referred to the amount of training in the care of CMC that the respondent received during residency. These questions require a measure of self-assessment that may be fraught with bias and inaccuracy. The survey design did not offer explanation for the questions (Appendix). The respondents also could have interpreted the meaning of these questions differently, which could have affected and biased the survey results as well as response rate.