Provider Perspectives of High-Quality Pediatric Hospital-to-Home Transitions for Children and Youth With Chronic Disease
OBJECTIVE: The objective of this study was to describe health care providers’ and hospital administrators’ perspectives on how to improve pediatric hospital-to-home transitions for children and youth with chronic disease (CYCD).
METHODS: Focus groups and key informant interviews of inpatient attending physicians, primary care physicians, pediatric residents, nurses, care coordinators, and social workers were conducted at a tertiary care children’s hospital. Key informant interviews were performed with hospital administrators. Semistructured questions were used to elicit perceptions of transitional care quality and to identify key structures and processes needed to improve transitional care outcomes. Transcripts of discussions were coded to identify emergent themes.
RESULTS: Participants (N = 22) reported that key structures needed to enhance transitional care were a multidisciplinary team, inpatient provider-patient continuity, hospital resource availability, an interoperative electronic health record, and availability of community resources. Key processes needed to achieve high-quality transitional care included setting individualized transition goals, involving parents in care planning, establishing parental competency with home care tasks, and consistently communicating with primary care physicians. Providers identified a lack of reliable roles and processes, insufficient assessment of patient and/or family psychosocial factors, and consistent 2-way communication with community providers as elements to target to improve transitional care outcomes for CYCD.
CONCLUSIONS: Many key structures and processes of care perceived as important to achieving high-quality transitional care outcomes for CYCD have the opportunity for improvement at the institution studied. Engaging key stakeholders in designing quality improvement interventions to address these deficits in the current care model may improve transitional care outcomes for this vulnerable population.
Children and youth with chronic disease (CYCD) are patients with either noncomplex chronic disease (defined as having a single chronic condition that is not progressive, varies widely in severity, and results in highly variable health care utilization [eg, type 1 diabetes mellitus]), or complex chronic disease (defined as having a single progressive condition [eg, cystic fibrosis]), or >2 significant chronic conditions that will last at least 1 year, result in high health care utilization, require ongoing treatment, and be episodically or continuously debilitating (eg, infantile spasms and complex congenital heart disease).1 CYCD are at risk for experiencing disjointed health care delivery because their increased health service utlization.2–4 Transitioning care from the inpatient to home setting is a vulnerable period for CYCD and their families during which poor care coordination may result in readmissions, adverse medical events, and familial stress.5,6
Transitional care includes inpatient activities that prepare patients to go home (eg, family education) and facilitate care once patients have arrived home (eg, communication between inpatient and outpatient providers).7 Researchers for previous studies have identified that specific transitional care processes are associated with decreased readmissions, improved patient satisfaction, and improved patient health outcomes.8–12 However, research of adult and pediatric care also suggests that many current transitional care practices remain incomplete, variably implemented, and/or ineffective.13–15
While researchers for previous studies have primarily focused on the parent perspective, less is known about hospital and primary care physicians’ (PCPs) perceptions of the value and efficiency of current pediatric hospital-to-home transitional care.16,17 Understanding the perceptions of transitional care from provider stakeholders is critical to developing effective, sustainable interventions. Our objectives in this study were to describe health care providers’ and hospital administrators’ perceptions of pediatric hospital-to-home transitions for CYCD and to identify potential future targets for achieving higher quality transitional care outcomes.
This was a qualitative study, conducted from August to December 2014, which was focused on inpatient general medicine service providers at a freestanding academic children’s hospital and at outpatient PCPs. General medicine inpatient service teams are comprised of an attending physician, 2 to 4 pediatric residents, a social worker, and 2 care coordinators. Care coordinators include nurses who perform clinical tasks (eg, equipment teaching) and nonclinical staff who aid with administrative tasks (eg, appointment scheduling). The institutional review board approved all study procedures.
Provider Recruitment and Eligibility
All participants were recruited by e-mail invitation using purposeful sampling, which selects a small group of participants on the basis of their rich experiences within the subject matter of interest.18 Inpatient general pediatric or hospitalist attending physicians, pediatric residents, nurses, care coordinators, and social workers sampled (hereafter referred to as inpatient providers) were eligible if they had worked full-time in their current position for at least 1 year, were routinely providing transitional care, and primarily served CYCD admitted to the hospital’s general medicine services. The general medicine services include both patients with noncomplex chronic disease for whom subspecialists play only a consultative role or no role (eg, patients with eating disorders or asthma) and patients with complex chronic disease who are not admitted to a subspecialty service. PCPs must have worked at their current job for at least 1 year and had at least 1 CYCD admitted within the previous 6 months. Eligible hospital administrators were selected from departments responsible for structures or processes of transitional care including care coordination, information technology, nursing services, and physician services departments.
Focus Group and Key Informant Interview Facilitation and Content
PCP and Inpatient Provider Focus Groups and Interviews
Three mixed provider focus groups (4–5 providers per focus group; total n = 14) were conducted in-person for ∼90 minutes by using a semistructured guide (Table 1). The interview guide was developed on the basis of current literature related to high-quality transitional care and revised on the basis of feedback from study team members, experts in CYCD care and/or health services research, and nonparticipating providers and/or administrators. Participating providers were asked to reflect on their experiences caring for CYCD with either a noncomplex or complex chronic disease who were hospitalized in a general medicine service for >3 days and who would likely be rehospitalized within their lifetime.1 Questions were developed to reflect the Donabedian framework (Fig 1) to elicit providers’ perceptions regarding what is needed within the domains of structures and processes of care to achieve high-quality transitional care outcomes for CYCD.19
Each group was facilitated together by the principal investigator (C.F.) and 1 nonclinical moderator (K.A. or S.H.) with experience conducting focus groups in health care settings. To include their viewpoints, providers unable to attend a focus group (n = 4) participated in 30-minute key informant interviews conducted by the principal investigator, for a total of 18 frontline provider participants.
Key informant interviews of departmental administrators were performed in-person for ∼30 minutes (n = 4). Administrators were asked their viewpoints on the current state of hospital-to-home transitional care under their purview, the structures and processes of care they would target to create higher quality transitional care, and how transitional care was perceived to fit into the organization’s priorities (Table 1).
All focus groups and key informant interviews were audio-recorded and then transcribed. Transcripts were reviewed for accuracy and de-identified. Transcripts were uploaded to a qualitative data program (Dedoose, Version 5.0.11; Dedoose, Los Angeles, CA), which facilitates creation of excerpts and assignment of codes to excerpts for analysis.
Coding was conducted from a phenomenological perspective by using immersion-crystallization methodology to identify meaning within the transcripts. This method, which has roots in grounded theory, employs frequent meetings to develop a group of codes to facilitate thematic analysis by using detailed immersion into excerpts and then reflection to identify emergent themes.20 First, the primary investigator (C.F.) immersed herself into the initial focus group transcript to generate a codebook by using open coding, which breaks apart the data into quotes and then delineates concepts to stand for interpreted meaning.20,21 A second reader, a qualitative researcher (E.J.), then similarly performed an immersive reading of the first transcript by using the initial codebook. The readers met 7 times over 6 weeks to reconcile codes. The refined codebook was then applied as subsequent transcripts were analyzed.
After open coding was complete, a final codebook was organized into pattern codes, which consisted of 3 categories: causes and/or explanations, relationships, or theoretical constructs related to high-quality transitional care.18 Accepted pattern codes were reapplied to all transcribed data by both coders independently and again reviewed over 3 meetings until an agreement was reached such that no new codes emerged and codes had been developed fully with differential variation.21
Once coding was complete, thematic analysis was conducted by organizing the pattern codes into themes on the basis the Donabedian quality of care conceptual framework relating the structures and processes of care to health outcomes.19 When reading the coded excerpts, we searched, reviewed, defined, and named the structures, processes, and outcomes and then organized them into themes and subthemes to be represented in a conceptual model (Fig 1).22
When a specific provider type (eg, PCPs) offered a unique perspective related to a particular theme, this is highlighted within the results section by indicating the provider type who held the unique opinion.
Overall, study participants were fairly experienced, with over half working in health care >10 years and about two-thirds of the group having worked at least 6 years or more in their current position. Participants represented an array of perspectives: inpatient nurses (n = 3), social workers (n = 3), PCPs (n = 3), inpatient attending physicians (n = 3), pediatric residents (n = 3), care coordinators (n = 4), and administrators (n = 4).
Structures Needed to Achieve High-Quality Transitional Care for CYCD
The following themes emerged related to structures needed to achieve high-quality transitional care for CYCD: (1) inpatient provider and hospital work environment; and (2) primary care medical home and community resources. Subthemes and supporting quotes can be found within the subsequent text and in Table 2.
Theme 1: Inpatient Provider and Hospital Work Environment
Subtheme: Collaborative Work Culture With Multidisciplinary Input and Clear Roles
In an ideal state, providers emphasized the importance of working in a collaborative team environment with clear roles that encouraged input from each provider type to create individualized patient care plans.
“Having the input of every team member is so important. It is why there are multidisciplinary team members because everyone is thinking about something different and has skills in different areas.”
Family-centered rounds and care conferences are structures that providers identified as facilitating this multidisciplinary approach and effective communication with the patient and family.
“We frequently will have care conferences with families to bring them and the different providers [together] to make sure we [all agree on] the goals of care for that individual patient.”
Subtheme: Inpatient Provider-Patient Continuity
Providers articulated that maximizing continuity of inpatient providers with CYCD across re-hospitalizations enhanced providers’ abilities to develop rapport with the patient and family. However, participants noted that inpatient provider continuity and role clarity were challenging to achieve in an academic setting with frequently rotating residents and attending physicians (Table 2). Given their often intricate medical and surgical histories, CYCD with medical complexity could benefit from inpatient provider continuity more than CYCD with noncomplex chronic disease.
“Chronic care patients need continuity because if they don’t, things will fall through the cracks by nature. I mean, if you have a workforce that’s constantly turning over and the patient isn’t, how could you possibly effectively have continuity?”
Physician services administrator
Subtheme: Hospital Resource Availability
CYCD often required services provided by inpatient consultants, ancillary staff, or radiologic services to clarify diagnostic questions or advance treatment. Readily available resources progress a patient toward their medical goals to achieve a timely transition home (Table 2). Delays or inaccessibility of hospital resources on evenings and weekends was identified as a barrier to timely hospital-to-home transitions (Table 2).
Subtheme: Interoperable EHR
Providers additionally identified that having a facile electronic health record (EHR) that facilitated care tasks (eg, family education) would improve their ability to transition a patient home by enhancing internal communication among inpatient providers.
“We really need to have a streamlined [electronic] record in that it would display not only home medication reconciliation for our children with medical complexities [but also] show home nursing, durable medical equipment, and respiratory therapy orders.”
Providers articulated frustration that sometimes the EHR led to provider rework and/or miscommunication between providers (Table 2). Notably, administrators added that organizational challenges persist in integrating the inpatient EHR with community practices (Table 2).
Theme 2: Primary Care Medical Home and Community Resources
Subtheme: Provide a Primary Care Medical Home and Community Ancillary Services
Providers noted that successfully transitioning a patient home was reliant on the presence of a community medical home available to provide care for CYCD and the availability of community ancillary health services (eg, home care nursing).
“So my frustration [about delays in discharge] is all the work that goes into setting up the home support structure, [in] particular home nursing. Getting approval and staffing [for home nursing] has been [a problem], and it has resulted in multiple ED visits and/or readmissions of patients.”
However, addressing the limited availability of community ancillary health services (eg, home care nursing) in rural or otherwise underserved settings was noted as an area to target for transitional care improvements.
“[Sometimes,] we are really not comfortable sending this kid home over the weekend because they don’t have the services in the community, and we are afraid that those community services are not available to [the family].”
Processes Needed to Achieve High-Quality Transitional Care for CYCD
The themes that emerged related to processes needed to achieve high-quality transitional care for CYCD were: (1) patient and family needs assessments and care planning; (2) communication practices; and (3) reliable methods. Subthemes and supporting quotes can be found within the subsequent text and in Table 3.
Theme 1: Patient and Family Needs Assessments and Care Planning
Subtheme: Set Attainable, Shared, and Individualized Medical Transition Goals
Providers identified that setting attainable, shared, and individualized medical goals that are used as a metric for when to transition a patient home was a critical process to establishing higher quality transitional care (Table 3).
Subtheme: Establish Familial Comfort With Care Plan and Competency With Home Care Tasks
Providers articulated 2 mutually reinforcing but different components of transitional care planning, which were to establish familial agreement and comfort with the care plan, and to ensure competency with home care tasks. For example, a mother needs to agree with the decision (“comfort”) that her child must go home with a nasogastric (NG) tube to optimize nutrition and also have the skill to replace the NG at home (“competency”).
“[Knowing if a family is ready to go home] is if the teaching is done and the parents can demonstrate independently that they are able to flush an NG tube, place an NG tube, and that they also voice that they’re actually comfortable in doing so.”
Subtheme: Assess Family Psychosocial Functioning and Social Determinants of Health
Providers identified that assessing and then understanding the social, cultural, and economic context of a patient’s family was a vital element to providing high-quality transitional care. Providers perceived that a family’s degree of psychosocial functioning (eg, parent mental health status), language or cultural factors (eg, limited English proficiency), socioeconomic status (eg, insurance coverage), and living proximity to the hospital might impact the family’s ability to return home, to access community services, and to attain the self-efficacy needed to successfully complete care tasks (Table 3). Providers noted that early assessment of these factors was critical for determining when a patient could go home and whether additional resources were needed.
“I try to ask: ‘Do you have other kids? Are they in school? Does that limit when you can come to [follow-up] appointments? Do you have transportation? Do you have private insurance? Do you have a co-pay? Is that going to affect whether or not you want to follow-up?’”
However, providers noted that there was no reliable method for identifying social determinants of health, especially because these variables could change during the course of a hospitalization. Providers perceived the unpredictability and liability of these factors as a common source of complications or delays in transitioning a patient to return home (eg, transportation access).
“I know it’s frustrating to other members of the team, as well as myself, that social factors can change overnight. A child can be ready for discharge tomorrow and then something dramatic happens and then the whole plan is disrupted.”
Theme 2: Communication Practices
Subtheme: Consistent Processes of Giving and Receiving Medical and Psychosocial Information
Providers articulated that high-quality transitional care includes timely giving and receiving of information between the inpatient and outpatient settings and includes both medical and social elements (Table 3). Changes to the care plan should be communicated before discharge with PCPs, outpatient specialists, and home-based or school-based services to adequately prepare for a CYCD’s return home (Table 3). Previous communication affords outpatient providers the opportunity to give input on the care plan and the ability to reinforce family education in the outpatient setting.
PCP participants added a unique perspective, indicating that they would ideally be involved early in the course of hospitalization rather than only at the time of discharge (eg, by phone for care conferences) given their ability to provide important psychosocial context and information related to the CYCD’s physical baseline.
“I think one value to having [PCPs like me] at the care conference about goals of treatment or discharge is that we are the experts about that patient’s care… During a hospitalization, I think there’s lots of details you can get caught up in that are not as [relevant when the patient is at home] and that might not pertain to the overall goals, and so it’s good to have someone with an outside perspective.”
Although communication was perceived as valuable by the majority of participants, delays in or incomplete communication were identified as barriers to higher quality transitions (Table 3). Ancillary service information and psychosocial issues that might have arisen during hospitalization were not routinely included in transition documentation. PCPs in particular expressed the importance of being updated about new or changing psychosocial concerns relevant to family functioning. Participants also identified the lack of a standard process to establish outpatient and PCP communication preferences for receiving information as a barrier to the hospital consistently communicating with the outpatient setting.
“I feel like [there could be more effective ways] that the resident can specifically contact a patient’s primary doctor, rather than talking to the person who’s covering that day or [the message] getting lost in the clinic’s phone tree. At [clinic name], the PCPs do come out of the room to [answer the phone call], but with other clinics I can never really actually get a provider on the phone to talk about the handoff.”
Theme 3: Reliable Methods
Subtheme: Reliable Methods Focused on Evidenced-Based Practices
Providers identified reliable methods focused on evidence-based practices as important to enhancing the effectiveness and efficiency of transition tasks. Reliable methods ensure that any individual can do tasks in a consistent manner. Reliable methods particularly benefit tasks that could be completed by >1 provider type or in >1 manner (eg, medication reconciliation or patient and/or family education; see Table 3).
High-Quality Outcomes of Transitional Care for CYCD
The theme that emerged related to high-quality transitional care for CYCD was to optimize patient and family outcomes. Subthemes and supporting quotes are within the subsequent text and in Table 4.
Theme 1: Optimize Patient and Family Outcomes
Subtheme: Meet Patients’ Medical Goals While Maximizing Family Psychosocial Functioning
Providers stated the primary role of the inpatient setting was to help the patient through an acute care crisis (Table 4). Therefore, a key outcome of high-quality transitional care is to return the patient to their optimal health status. However, providers also recognized that maximizing family psychosocial functioning and parent readiness was an important outcome of transitional care for the patient to meet his or her health goals.
“The goal [of transitional care] is to make sure the patients are meeting all of the discharge criteria, that they are medically stable and then a large component of their discharge can also be family caregiver readiness.”
Subtheme: Avoid Readmissions
Providers identified avoiding readmission or return visits to the emergency department as important outcomes in high-quality transitional care.
“I usually think about what are the things that will keep [patients] out of the hospital for the longest period of time possible, and how do we create that type of support system such that they stay out of the hospital.”
Regulatory Structures and Processes Affecting Transitional Care
Administrators, unlike frontline providers, highlighted the impact of regulatory requirements (especially when tied to financial penalties) on determining the content of transitional care and driving its place among hospital priorities. Administrators specifically noted that a growing emphasis on readmissions and financial risk sharing nationally has driven the hospital to focus on improving transitional care processes (eg, care coordination).
“In the current payment model, we don’t get paid for all the [care coordination] that is happening out in the community. The first thing that will happen [with health care reform] is we’ll start to get penalized when [patients] get readmitted, so we’ll get a negative consequence or we won’t get paid, so we’ll do it to lessen our hurt…”
Physician services administrator
In this study, we identified the critical structures, processes, and outcomes related to high-quality transitional care from the perspective of frontline providers and hospital administrators and provided new insights regarding how to approach improving the quality of hospital-to-home transitions for CYCD. Specifically, we identified improvements to health care transitional structures and processes needed to achieve high-quality outcomes for CYCD including meeting their medical goals, maximizing family functioning, and avoiding readmissions.
Our findings are consistent with previous literature in which the value of a family-centered multidisciplinary team approach to inpatient care is established.23–25 We additionally suggest interventions for improving structures of care that emphasize continuity for CYCD (Table 2). One potential approach to optimizing inpatient provider-patient continuity, specifically for the subset of medically complex CYCD, would be to develop a dedicated inpatient service for them with a defined group of providers. Another potential structural intervention might involve developing secure cloud-based, electronic linkages and availability of CYCD’s medical and surgical histories and ancillary care services to facilitate more seamless information sharing across the continuum of care.
Our participants also highlighted that successfully transitioning a CYCD home was contingent on the availability of a primary care medical home and community resources. Without broader insurance reform and state-based policies that support increasing the accessibility of high-quality community resources for pediatric chronic disease (like home nursing), inpatient providers and hospital-focused programs may be limited in their ability to improve transitional care. Therefore, policies and initiatives to achieve transitional outcomes, including minimizing readmissions, need to focus on the entire continuum of care.26
Our findings regarding care processes including the importance of setting shared transition goals and conducting patient and family needs assessments that include both comfort and competency with care tasks (Table 3) are congruent with recent evidence that parents want to be involved in care planning and establish self-efficacy with home care before transitioning.16,17,27 Previous work has already addressed including families in care planning; however, more robust processes may be needed to assess competency with home care tasks, including standardized protocols for home care teaching and rigorous “rooming-in” practices in which parents assume full care before discharge for all CYCD.23–25
We also found that although frontline providers valued assessing family psychosocial functioning and social determinants of health when conducting care planning, they did not have standard processes to assess these factors. Recent studies by Beck et al28,29 revealed that families of lower socioeconomic status experience challenges and stress from hospital-to-home transitions, and proactively addressing these challenges may prevent adverse events and reduce postdischarge disparities. Their work, and ours, support policies that integrate social risk factor assessment with hospital-based pediatric chronic disease care as a way to improve family readiness for discharge and minimize preventable readmissions.30 Possible future interventions might include utilizing a standardized screening tool to proactively identify psychosocial barriers to successful transitions home, assess parents’ subjective agreement with the plan to be discharged, and assess their competency with home care tasks.31,32 Such screening could facilitate social workers or other staff in providing targeted transition supports ultimately improving family self-efficacy and potentially reducing readmissions.33
Another key finding in this study is that communication practices require consistent processes of both giving and receiving medical and psychosocial information. Our study participants highlighted that because of CYCD’s frequent and manifold health care interactions, there is a heightened need to consistently communicate care plans with outpatient, specialty care, inpatient, school-based, and ancillary care service providers to avoid readmissions.34–36 Creation of health information exchanges, defined as the process of sharing reliable, confidential, and interoperable electronic health-related information, may provide 1 approach to the sharing of a child’s care plan across settings.37–39
Lastly, we found that a lack of reliable methods focused on evidence-based practices may hinder providers’ ability to deliver high-quality transitional care. Currently, no comprehensive evidence-based standards for pediatric transition care exist. However, the authors of a recently published framework outline a general approach to transitional care and new quality measures have been developed to evaluate pediatric transitional care.5,40 Further research is needed to understand which specific aspects of transitional care might benefit from standardization and which are specific to CYCD versus all children.
This study has some limitations. The data were self-reported from a limited number of participants who were purposely selected at a single institution and thus are not generalizable and subject to selection bias. However, qualitative analysis of focus group and key informant interview data allows for in-depth evaluation of experiences of participants unavailable through other methods. Participants were not asked to prioritize which structural or process improvements were most important to achieving high-quality transitional care, thereby limiting our ability to weigh the various themes identified. However, we provide insights into the structures and processes of transitional care that may be high-value targets for further study and quality improvement.
In this qualitative study of hospital-to-home transitional care for CYCD, we found that many key structures and processes perceived as important to achieving high-quality transitional care have opportunity for improvement at the institution studied. This may partially explain the challenges families often experience with transitional care and higher readmission rates commonly observed in CYCD. Engaging key stakeholders in designing quality improvement interventions to address these deficits in the current care model may improve transitional care outcomes for this vulnerable population.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: Funded by the Academic Pediatric Association’s Young Investigator Award Program.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
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- Copyright © 2017 by the American Academy of Pediatrics