Family-Centered Hospital Admissions

In this issue of Pediatrics, McDaniel et al¹  discuss the process of developing and validating a questionnaire asking caregivers about their experience of the pediatric hospital admission process. The survey was created as part of a larger study comparing direct admission (from ambulatory care to hospital) with admission via the emergency department in >70 children’s hospitals and general hospitals across the United States.²  That study, in turn, is part of a comprehensive and thoughtful multiyear body of work by the authors and colleagues, who have examined multiple aspects of pediatric hospital transitions.^3–9 

The authors rightly argue that hospital admission is a complex transition of care with many similarities to hospital discharge and should be measured and assessed as such. In previous publications, they have explored some of the subtle and not-so-subtle conflicting priorities of community doctors, hospitalists, and parents regarding hospital admissions (eg, payment incentives, ease of admission, desire for more thorough testing) and have documented both the advantages and disadvantages of direct admission in appropriate cases (eg, increased length of stay but lower costs).^5,6  The present caregiver survey, using questions largely derived from inpatient hospital experience surveys, provides a validated tool to compare the admission experience in different settings for children with specified conditions amenable to direct admission. Strengths of the instrument include extensive cognitive pretesting and piloting, development with a multidisciplinary panel that included parents, and translation into the most common languages across study sites (Spanish, Arabic, Somali, Nepali). A limitation is that piloting and cognitive interviews were only conducted in English. Additionally, although the authors aimed for a low reading level, there are still items with complex vocabulary that could be further simplified (eg, they could use “get” instead of “receive”). Nevertheless, we commend the authors for taking an important step toward measuring and evaluating a key hospital process that is understudied, typically lacks family input, and is subject to substantial undesirable variation.

Like discharge, admission is only one stop in the extended patient journey. As care has become more complex and specialized, handoffs of care have become more frequent and have been the subject of numerous improvement efforts. As the authors point out, most research on transitions in and out of the hospital has focused on hospital discharge, including the creation of formal discharge programs like the Agency for Healthcare Research and Quality’s Re-Engineered Discharge and regulatory efforts like the Center for Medicare and Medicaid Services readmissions penalties.^10–14  Structured handoffs like the illness severity, patient summary, action items, situational awareness and contingency planning, and synthesis by receiver method, (I-PASS) initially developed to improve the reliability of change-of-shift handoffs as resident work shift duration decreased over the past 2 decades, have subsequently been shown, when properly implemented, to significantly reduce medical error and miscommunication both at change of shift and across a range of care transitions.¹⁵  Family-centered rounds are another intervention with a high potential to create shared mental models and improve communication and care for hospitalized patients, families, and care teams.^16,17  These programs have been buttressed by the benefits offered by integrated care networks and electronic medical records. Nevertheless, effective transfer of care often remains elusive.¹⁸ 

One reason may be the relative thinness of family involvement in care beyond communication at the bedside. An intriguing finding of McDaniel and colleagues’ testing of their admission survey was that caregivers scored the domains of patient and family engagement and information sharing higher than the domains of timeliness and care delivery. This is a recurrent finding in pediatric hospital surveys.^19,20  It is a reminder that courtesy, respect, and information-sharing, although necessary and desirable, are not all that is needed to provide the kind of care that matters to patients and families. Courtesy in and of itself does not raise the quality of care, and information sharing is not always bidirectional. In addition, families from systemically disadvantaged backgrounds, whether based on language, race, ethnicity, or socioeconomic status, may experience information-sharing in a biased and differential manner.

It is axiomatic that patients and families see aspects of health care that are not evident to their health care providers. Prominent among these is the experience of transition. If we are to solve the recalcitrant problem of health care transitions, the elements we need most may be the observations, advice, and assistance of families. Although health care has taken steps toward this goal, true collaboration has yet to be realized. All families need to be given the tools to facilitate this process, in the form of widely accessible multilingual support and education regarding their children’s conditions, how to navigate hospitals and health care, and how to recognize and mitigate risks. Both patients and providers need easily accessible pathways to provide input into the system and see it acted on. Initiatives like the caregiver admission survey, with its meticulous background research on pediatric transitions, have laid a strong foundation, but the road to true family-centered care still lies before us.