Identifying unmet informational needs in the inpatient setting to increase patient and caregiver engagement in the context of pediatric hematopoietic stem cell transplantation

Abstract

Background Patient-centered care has been shown to improve patient outcomes, satisfaction, and engagement. However, there is a paucity of research on patient-centered care in the inpatient setting, including an understanding of unmet informational needs that may be limiting patient engagement. Pediatric hematopoietic stem cell transplantation (HSCT) represents an ideal patient population for elucidating unmet informational needs, due to the procedure’s complexity and its requirement for caregiver involvement.

Methods We conducted field observations and semi-structured interviews of pediatric HSCT caregivers and patients to identify informational challenges in the inpatient hospital setting. Data were analyzed using a thematic grounded theory approach.

Results Three stages of the caregiving experience that could potentially be supported by a health information technology system, with the goal of enhancing patient/caregiver engagement, were identified: (1) navigating the health system and learning to communicate effectively with the healthcare team, (2) managing daily challenges of caregiving, and (3) transitioning from inpatient care to long-term outpatient management.

Discussion We provide four practical recommendations to meet the informational needs of pediatric HSCT patients and caregivers: (1) provide patients/caregivers with real-time access to electronic health record data, (2) provide information about the clinical trials in which the patient is enrolled, (3) provide information about the patient’s care team, and (4) properly prepare patients and caregivers for hospital discharge.

Conclusion Pediatric HSCT caregivers and patients have multiple informational needs that could be met with a health information technology system that integrates data from several sources, including electronic health records. Meeting these needs could reduce patients’ and caregivers’ anxiety surrounding the care process; reduce information asymmetry between caregivers/patients and providers; empower patients/caregivers to participate in the care process; and, ultimately, increase patient/caregiver engagement in the care process.

INTRODUCTION

Patient-Centered Care Leads to Increased Engagement

Patient-centered care is a growing priority within the healthcare system. It has been shown to improve outcomes and increase both patient satisfaction and engagement. ^1,2 Patient engagement occurs in many forms, including shared decision-making (between patients and physicians), ³ patients reading their clinical notes, ^4,5 and the use of patient portals in the outpatient setting. ^6,7 Despite encouraging evidence of the positive effects of patient engagement, there is a paucity of empirical research on patient engagement in the inpatient setting. Recent data suggest that health information technology (IT) has the potential to increase patient engagement in many areas, ⁸ including in hospital settings. ²

Research in fields like computer-supported cooperative work and human-computer interaction has found that the adoption and use of IT in organizational contexts is deeply interconnected with a wide range of complex social issues, such as cultural norms, collaborative work practices, and individual users’ preferences. Understanding these socio-technical challenges is especially relevant when designing IT systems that aim to engage patients in hospital settings. ⁹ In their article reviewing computer-supported cooperative work’s methods and ideas for the informatics community, Pratt et al. ¹⁰ argue that “socio-technical issues dominate the success or failure of medical information systems” and need to be given serious consideration.

Technically complex medical data coupled with the manner in which healthcare teams function can lead to “information asymmetry.” ¹¹ For example, although physicians conduct inpatient bedside rounds that include patients as well as their families, ¹² providers still have access to all of the clinical data in the patient’s electronic health record (EHR), whereas patients have no such access. Information sought by patients and recorded during fast-paced bedside rounds is typically handwritten on loose sheets of paper. ¹³ Patients tend to ask questions only when they are informed, empowered, and have the confidence to do so, ¹⁴ and, as a result, important patient informational needs may not be met during bedside rounds, despite the close interactions between the care team and the patient that these rounds afford.

Fortunately, a new patient-centered healthcare delivery model that promotes safe, effective, timely, efficient, and equitable practices is emerging. ^15–17 Due to its intensity, hematopoietic stem cell transplantation (HSCT) provides an ideal model for how focusing on patient-centered care could increase patient engagement, thereby achieving improved satisfaction and outcomes in a highly complex patient population.

Hematopoietic Stem Cell Transplantation: Patients and Caregivers

Hematopoietic stem cell transplantation (HSCT) is an intense treatment modality of last resort for many cancer and non-cancer conditions, ¹⁸ requiring prolonged inpatient care lasting a month or more. ¹⁹ Approximately 20 000 HSCTs are performed annually in the United States. ²⁰ For pediatric recipients, an HSCT cannot be performed unless a suitable caregiver (usually a parent) is identified; medically fragile children undergoing HSCT remain dependent on caregivers to attend to their healthcare needs long after hospital discharge. ²¹ Caregivers are often required to stay with the patient 24 h/day during the first 3 months following hospital discharge, sometimes longer. Even before discharge, HSCT – an intense and life-threatening procedure – can cause significant distress for children and parents, which impacts their physical, psychological, and social well-being. ²²

Caregivers must fulfill multiple roles to properly care for a child receiving an HSCT. One recent study of chronically ill children described the roles of such caregivers as being: “parents, nurses, advocates, activists, educators, and case managers in the lives of their [medical] technology-dependent children.” ²³ Therefore, caregiver activation and engagement on behalf of the child (the patient) plays a critical role in fostering effective patient-caregiver-provider partnerships, ²¹ which is increasingly recognized as the optimal model for healthcare delivery to pediatric populations, particularly for children facing life-altering medical treatments. ¹⁶ It is essential to develop effective strategies for enhancing this partnership. ²⁴

The Potential Role of Health Information Technology

The vast majority of acute care hospitals in the United States now have an installed EHR system. ²⁵ This opens up many possibilities for integrating EHR data with other resources to provide patients with information and increase patient engagement, with the goal of improving outcomes. ⁸ However, there are significant gaps in knowledge of how patient- and caregiver-facing health IT tools are used for inpatient care. ² A few studies have reported on efforts to design and test various approaches for engaging patients in both adult ^26–29 and pediatric inpatient settings. ^30,31 A small number of tools have been designed to support patient engagement in high-risk or critically ill pediatric populations, such as the neonatal intensive care unit, ^32,33 but, to our knowledge, health IT tools that support engagement in the pediatric HSCT population have not been previously described in the literature. In this paper, we explore the informational needs of pediatric HSCT patients and their caregivers. The data obtained in this study has been used to provide insights for the design of a health IT system intended to support patients and caregivers in the inpatient setting, with the goal of empowering them and increasing patients’ engagement in their own care.

METHODS

Study Site

The field sites in this study included the inpatient pediatric Blood and Marrow Transplant (BMT) unit and the outpatient BMT clinic at the University of Michigan, a large, tertiary academic medical center. Yearly, the pediatric BMT team performs approximately 50 blood and marrow transplants in patients 0–25 years old. (The term “BMT” has generally been replaced by “HSCT.”)

Data Collection

The data presented herein are part of a larger research project aimed at understanding the HSCT experience. ³⁴ For this paper, study participants were recruited through referrals from the HSCT clinical team and included pediatric patients at varying stages of the HSCT process. A total of 17 patients were recruited for this study. All patient participants had already undergone the transplant procedure. Our primary dataset included semi-structured interviews with the primary caregivers of pediatric HSCT patients and their families and focused on the challenges of inpatient hospital life that involved informational needs. At the time the interviews were conducted, 7 of the study participants were inpatients recovering from an HSCT, and 10 of the study participants had recently been discharged following an HSCT and were being treated in the outpatient clinic. On-site interviews lasted ∼1 h and were recorded and transcribed; children’s interviews were recorded with parental permission. During the interviews, additional family members and, occasionally, older children going through the HSCT process joined the conversation and provided insight.

The semi-structured interviews we conducted explored several domains, including: (1) the patient’s and caregiver’s experience with HSCT; (2) the emotional challenges of HSCT; and (3) the information that the caregiver needed about the HSCT process. During the course of their interviews, four of the seven inpatient participants were also shown a paper prototype of a health IT system designed to support HSCT patients and caregivers during their inpatient stay ( Figure 1 ). The prototype was used as a design probe to help understand patient and caregiver informational needs during the HSCT process. The paper prototype was developed prior to this study based on one author’s (S.W.C., an HSCT physician) experience and interviews with other HSCT patients as part of focus groups, ³⁵ as well as with the HSCT care team, which included physicians, nurses, pharmacists, and nutritionists.

Figure 1:

Examples from the low-fidelity paper prototype shown to four of the seven inpatient participants in the study. This prototype, used as a design probe to better understand how the informational needs of caregivers could be met, was developed based on feedback from the clinical team as well as from HSCT patients and caregivers from previously conducted focus groups.

These data, and the associated findings, were also informed by ∼20 h of observation by the first author (E.K.). Observations were made during multidisciplinary hospital bedside rounds with the HSCT care team as they interacted with patients and caregivers as well as during informal conversations with HSCT team members, including nurses, doctors, nutritionists, pharmacists, and social workers. Observational data were recorded as field notes and subsequently transcribed. In addition, we used transcripts from three focus groups that included 26 participants involved in the HSCT process, which included six caregivers of pediatric HSCT patients (as part of a study led by the last author), ³⁵ and drew on the insights of a 2-year ethnographic study of adult HSCT ³⁶ to triangulate our interview and observational data. Institutional review board approval for the observations and data collection was obtained along with participant consent (HUM00093082: “Personalized Engagement Tool for Pediatric BMT Patients and Caregivers”). Additional methodological details can be found in the Supplementary Appendix .

Data Analysis

Data were analyzed using a thematic grounded theory approach, ^37,38 in that our data collection and analysis mutually informed one another. During the first stage of data analysis, selected initial interviews were transcribed and analyzed using an open coding method. We then collectively generated new codes as significant concepts were identified, discussed, and revised. Data analysis continued during observations and later interviews as these codes were used as probes.

The second stage of data analysis, using new data, resulted in consistent themes and confirmed our findings. Similarly, field notes were coded and analyzed during data analysis sessions. Analytical memoranda – consisting of notes and reflections on the data – were also generated and discussed among the group as theoretical insights emerged from the ongoing data collection.

RESULTS

Overall Findings

The experiences of the inpatient pediatric HSCT patients/caregivers who were part of this study were intense and challenging. Over the course of their hospital stays, pediatric HSCT patients/caregivers received a large amount of informally communicated information. For example, patients/caregivers received information orally, from the HSCT team during their morning rounds, or visually, by observing nurses interacting with their child. Patients/caregivers routinely referenced assorted records of information, such as sketches, diagrams, and lists, generated by both clinicians and themselves, to understand and manage complicated medication and dietary regimens.

Within this complex information environment, we identified three stages of the caregiving experience that could potentially be enhanced by a health IT system that supports and improves engagement: (1) navigating the health system and learning to communicate effectively with the healthcare team, (2) managing the daily challenges of caregiving, and (3) transitioning to from inpatient care to long-term outpatient management. Although we have separated these stages of caregiving for analytic purposes, we acknowledge that, in everyday practice, these stages overlap and are not mutually exclusive. The challenges discussed in each stage represent only a subset of the informational and emotional needs of pediatric HSCT caretakers over the course of the month-long hospital stay necessary for the treatment. Our goal was to highlight several critical patient/caregiver needs that could feasibly be supported by the use of health IT, which should, in turn, lead to more patient and caregiver activation and engagement during the patient’s hospital stay.

Caregiving Stage 1: Navigating the Health System and Learning to Communicate Effectively with the Healthcare Team

Study participants noted that the first few days of the HSCT process were informationally and emotionally intense. Patients were admitted to the hospital for pretransplant conditioning therapy (involving high-dose chemotherapy and other Medications) and remained in the hospital for about 1 month or until engraftment, the process by which the transplanted stem cells begin to produce new blood cells. The majority of the caregivers participating in the study stayed in the hospital with their child throughout the entire HSCT process (the average length of stay was ∼4–6 weeks). Living day-to-day on the hospital floor caused disruptions to family life, such as separation from other children and family members, as well as incurrence of financial burdens (which has also been reported elsewhere ³⁹ ), for both patients and caregivers.

Given the critical role of caregivers, the hospital does not approve a transplant without a formal caregiver plan. Prior to admission, caregivers must undergo an orientation to educate them about the HSCT treatment process and about any clinical trials for which their child is eligible. Although this initial training is important, its success depends on the ability of caregivers to absorb and process a large amount of detailed medical information before they have first-hand experiences within the clinical context. Furthermore, because HSCT is often a treatment of last resort, caregivers and their families often experience heightened anxiety around the subject of their child’s health, making it difficult to process and retain the necessary information at the time it is provided to them. The majority of participants, in fact, could not recall which clinical trials they had signed up for during the initial stage of the HSCT process. One participant recalled that she and her husband had to make the decision about whether or not their son should participate in a clinical trial very quickly after learning he needed to undergo an HSCT ( Table 1-A ).

Table 1:

Representative Caregiver Comments, Including the Topic for Which Each Is Noteworthy

Caregiving Stage 1: Navigating the Health System and Learning to Communicate Effectively with the Healthcare Team
A) Enrollment in clinical trials
“When we made a decision about being in a clinical trial it was right after we found out he was diagnosed … I know people told me a lot of this information, but like I said, you are already on information overload and you really aren’t thinking as clearly as you might be able to at some points … and almost you are not capable at the moment … I think we had determined that we would just sign on for it and let God make the decision, but looking back, I do not think I had enough information on it and I’m glad it worked out like it did.”
B) Hand drawn informational references
“His diagrams were amazing. He drew everything out for my husband, myself and [son], and just laid it all out. I laminated his drawings … When I explained BMT to family members I would pull them out. It helped everybody understand it.”
Caregiving Stage 2: Managing daily caregiving work (Facet 1: The medical care team)
C) Recording information from the care team
“When I get information from the doctors, I just can’t seem to keep it nice and straight. I have to write all over the page.”

Caregiving Stage 2: Managing daily caregiving work (Facet 2: Laboratory results)
D) Tracking and interpreting laboratory results
“I just look at how it is trending mostly. And do I understand the details of that? No, not really. I know they [clinicians] think about infusing platelets if it gets, I think, at 10 or something. And [our daughter] needs hemoglobin at 8. So when I’m recording things, I record if [our daughter] had any infusions or a Neupogen shot to stimulate the white blood count … I don’t know what that means exactly.”
E) Waiting for laboratory results
“His blood counts came back all low and out of whack … We’ve been here almost 5 weeks. He’s had a lot of complications along the way. His numbers aren’t coming up like they should. We’re here longer than we expected … We’re just waiting for the numbers to come up … That’s the hardest part is the waiting. The waiting and if it’s going to happen.”
F) Interpreting laboratory results
“The platelets are confusing to me sometimes. Now over the last few weeks over 50 000 is where they like her to stay at. But before then, I probably wouldn’t know. All the numbers is [sic] confusing … They give you paper, a lot of paperwork, but I’m pretty sure a lot of parents don’t go through all the paperwork. I didn’t. I kind of skimmed through it and read what I think is important.”
G) Tracking daily medications
“She is on so many medications as most of these kids are. And it constantly changes as their needs change. Day to day it’s different and I feel I’m constantly asking about that … And as she’s improving now it’s changing a lot each day.”

Caregiving Stage 2: Managing daily caregiving work (Facet 3: Medication management)
H) Understanding each medication’s purpose
“[T]he list of medications the nurses did for me and all that stuff was extremely helpful so that I know which one is which. We are going to use the pill containers and get everything all labeled out.”
I) Understanding medications and side effects
“I would like them to give me a list of all the medications and what they’re for. Because I find myself, ‘Okay this is a new one.’ I’m writing it down and then looking online. Or I would ask the nurse. And they are always good to give me information, but it would be nice just to have a print-off of the names of the medications, what they are for … Even when we are here there is a new one starting today. And he’s on so many you can’t keep track. And it changes a lot … He had dry mouth and that wasn’t mentioned so we had to ask. ‘He’s got dry mouth. What is that from? Is it from the transplant or is it from the medication?’ We found out it was from the medication.”

Caregiving Stage 3: Transitioning to from inpatient care to long-term outpatient management
J) Central line care and discharge planning
“I am aware that I do have to learn line care before I go home, but no training yet … Sometimes you might do something over and over, but when you get home it’s like you never did it before. Or it is so many steps, did I get it right? Even if you have it right, you just might want to make sure because you don’t want to give your child an infection. It’s like the biggest thing you think about, ‘Am I doing something wrong?’”

Instead of referring to generic, hospital-provided orientation materials, patients/caregivers often utilized informal documentation, such as graphs or charts created by clinicians, during their hospital stay. For example, several participants showed us hand-sketched diagrams from a physician that resembled a personal health infographic ( Figure 2 ). One participant explained how she saved several sketches drawn by her son’s physician during their early days in the hospital ( Table 1-B ).

Figure 2:

Two hand-drawn educational diagrams given to a family by one of the HSCT physicians. The family laminated the diagrams, to protect them, and referred to the diagrams throughout the patient’s hospital stay. The top diagram describes the process of collecting the stem cells for the transplant, and the bottom diagram provides a high-level overview of the transplant process itself.

These diagrams functioned as reference guides to the HSCT treatment plan. As patients/caregivers learned about the HSCT process, contextualized information, in the form of charts, calendars, lists, spreadsheets, or pictures, was similarly valued and used by caregivers to help educate and re-educate themselves about what to expect while the patient was undergoing such a medically complex and emotionally difficult treatment process.

Caregiving Stage 2: Managing Daily Caregiving Work

Life in the hospital involved a range of activities for patients/caregivers, such as monitoring diet and exercise, helping administer medications, and soothing and entertaining sick children. Patients/caregivers adapted to the rhythms of hospital life, which involved long hours of anxious waiting and watching punctuated by bursts of clinical activity in which they had to rapidly digest medical information.

Our study participants noted that one of the most important daily caregiving tasks included communicating and coordinating with a large HSCT care team, comprised of physicians, pharmacists, nutritionists, social workers, fellows, residents, and nurses, during multidisciplinary rounds, a time when the entire team visited the patient to discuss their progress as well as treatment plan revisions. The multidisciplinary bedside rounds were viewed by patients/caregivers as an important time to ask questions or raise concerns. However, several facets made communicating during these rounds challenging.

Facet 1: The Medical Care Team

Participants explained that members of their child’s HSCT care team changed over the course of their hospital stay. For instance, physicians at the field site rotated every 2 weeks on the HSCT floor. Patients/caregivers noted that it was challenging to simply remembering who the current care team members were, given their fatigue from sleepless nights and the stressful medical situations routinely faced during the hospitalization. Additionally, clinicians had different communication styles: one participant reported that she often struggled to understand the quick exchanges between clinicians during rounds and needed to take notes so that she could reflect on the information provided to her at a later time ( Table 1-C ).

Facet 2: Laboratory Results

Some of the most important things discussed during rounds were the laboratory results that provided the patients’ daily blood counts, which are used by physicians to track the success or failure of the transplant. Blood count numbers were often recorded on loose sheets of paper ( Figure 3 ) or on hospital-issued calendars hung in patient rooms. Some physicians recorded patients’ values on their calendar during rounds, while others discussed the blood counts with the care team, leaving it to the parents to overhear and record the numbers. One caregiver described some of the challenges of tracking his daughter’s blood counts from the beginning of her treatments ( Table 1-D ).

Figure 3:

A table of a patient’s blood counts recorded by one of their family members during the patient’s transplant admission. Many of the numbers have additional annotations recording notable events that occurred at the time of recording.

It was crucial that patients/caregivers received laboratory results as soon as possible, to help understand their child’s clinical progress. Rising blood counts typically indicate that the HSCT treatment is working. If blood counts were lower than expected, however, patients/caregivers often experienced tremendous anxiety waiting for the next round of tests to bring “better numbers” ( Table 1-E ). Study participants routinely created their own information artifacts to record blood work information ( Figure 3 ) and posted count updates via social media. However, we found that the clinical context for interpreting blood counts was poorly understood by patients/caregivers. One participant noted being confused about her child’s platelet counts ( Table 1-F ).

Facet 3: Medication Management

Patients/caregivers felt that managing patients’ medication regimens was complex. Pediatric HSCT patients were usually prescribed 15 or more medications and were required to take them multiple times each day. Close monitoring was required and, in preparing for discharge, patients/caregivers were tasked with making sure they could properly administer medications orally and intravenously through a central line catheter. Managing medication regimens was confusing and caused anxiety for patients/caregivers leaving the hospital and the oversight of the HSCT clinical team ( Table 1-G ). One participant noted that nurses in the hospital helped the family prepare for discharge by creating an informal, sketched list of medication types ( Table 1-H and Figure 4 ), and patients/caregivers who did not receive such a list noted a desire to have one ( Table 1-I ). Patients/caregivers also used homemade calendars to track important medications given in the hospital ( Figure 5 ).

Figure 4:

A medication list prepared by a nurse to help a caregiver understand the purpose of each of the patient’s medications. Note that this page also includes other clinical parameters describing criteria for transfusing red blood cells and platelets.

Figure 5:

A calendar maintained by a caregiver to keep track of multiple medications and other medical events relevant to their child. A detailed list of medications, including names, routes, and days of administration, can be found at the bottom of the calendar. Other medications as well as other procedures (eg, platelet transfusion) are listed on particular days in the calendar itself. Note the list of five anti-nausea medications that the caregiver had recorded as being tried by the patient (bottom left). It is important for caregivers to know what the different medications are used for as they transition to more direct management of their child’s care in the outpatient setting.

Caregiving Stage 3: Transitioning from Inpatient Care to Long-Term Outpatient Management

In the last week of their inpatient admission, patients/caregivers learned about transitioning to outpatient management, which was considered another major challenge. In addition to learning how to manage complex medication regimens, patients/caregivers received detailed instruction and training on central line catheter care, monitoring for signs and symptoms of infection, as well as proper nutrition and exercise for the patient. Transitioning from dependency on the medical team to the responsibilities of performing routine care fell on the patient/caregiver. This nurse-like level of responsibility was anxiety-inducing, because improper adherence to the instructions could result in life-threatening complications ( Table 1-J ).

DISCUSSION

The findings herein suggest that pediatric HSCT caregivers have considerable informational needs that must be met in order for them to care for their child during their month-long inpatient stay and for transitioning to the outpatient setting. When these needs go unmet, caregivers’ and patients’ anxiety increases and the potential for meaningful engagement in the patient’s care decreases. Pediatric HSCT patients represent an ideal population for a study of how to develop novel health IT systems to help support patient-centered care and promote patient and caregiver engagement. We provide insights and recommendations on how to develop an evidence-based, user-centered health IT system to support the informational needs of patients and caregivers. We focus on practical solutions that can be easily implemented and acknowledge that many other needs and challenges of patients and caregivers are not addressed. Our recommendations are related to the caregiving stages and challenges described above, but these overlap with one another to some degree. Many of our suggestions are straightforward, yet they have not been widely implemented in hospital settings.

This work has revealed deficiencies in the delivery of inpatient care to critically ill, vulnerable populations, which warrant further attention. It is evident that paper has been the primary medium for communicating information to and recording information for families in the inpatient setting. It is time-consuming and cumbersome to continually ask the healthcare team to print out blood tests, lists of medications, or clinical trial-related documents. The pace, complexity, and intensity of inpatient care is further impacted by rotations with different providers. ²³ Inpatient rounds often do not provide patients/caregivers with adequate opportunities for meaningful two-way communication with the healthcare team. Families under duress often consent to interventional studies, the details of which they have little or no recollection. Collectively, these communication challenges give rise to multiple situations in which the needs of patients and caregivers are not adequately met and patient/caregiver engagement is limited.

It is possible that interventions aimed at increasing engagement, delivered on tablet computers might better fulfill patient/caregiver needs and allow for more advanced interactivity and functionality, as described below. Most of our recommendations involve providing information to patients/caregivers in a way that will be meaningful to them. It has been shown that “information given to patients and families can not only reduce anxiety but also empower them to become involved in the decision-making process.” ⁴⁰

Recommendation 1: Provide Real-Time Access to EHR Data

It is clear from the interviews we conducted with patients and caregivers that information asymmetry between patients/caregivers and providers remains a problem for the medically complex pediatric HSCT population. Laboratory results such as white blood cell counts were extremely important to pediatric HSCT patients/caregivers and, for caregivers, could mean the difference between life or death for their child. Families should have access to laboratory results as soon as they become available. This is in contrast to recommendations made for outpatient portals, in which it has been suggested that results should first be reviewed by a provider and subsequently released to the patient/caregiver. ⁴¹

As previously discussed, during any given visit from the healthcare team during multidisciplinary bedside rounds, families often had not been provided with their child’s latest laboratory results. This may have led to caregivers feeling less empowered and more anxious during an already stressful time, and may result in suboptimal caregiver participation in the discussions taking place during these rounds. Having prior knowledge of their child’s latest laboratory results may provide caregivers who lack clinical expertise time to prepare their thoughts and formulate questions that they might otherwise be intimidated to ask in front of a large care team. ⁴² Providing a way for patients/caregivers to record their concerns or questions, such as on an electronic “notepad,” could be a simple way to further support this approach with health IT. ^29,43

We are not suggesting that every laboratory result be provided to families, because the large amount of information from a variety of laboratory tests that clinicians conduct to manage their patients’ care could overwhelm patients/caregivers; many of these tests (eg, serum chloride) are not as relevant to the patients’ outcome; and caregivers’ with low numeracy may find it difficult to properly interpret these laboratory results. ⁴⁴ However, empowering families with real-time data is one way to reduce the information asymmetry between the care team and patients/caregivers that is often pervasive in inpatient settings. Because the informational needs of patients and caregivers can vary, ⁴⁵ EHRs could allow for customization, so that families with greater informational needs would be able to view more laboratory results and those with lesser informational needs would see fewer laboratory results. Providing the option to trend laboratory results and learn more about their interpretation would also be valuable.

Recommendation 2: Provide Information About the Patient’s Clinical Trials

It is common for pediatric HSCT patients to be enrolled in one or more clinical trials. However, we found that many caregivers of pediatric HSCT patients were unaware of the trials in which their child was enrolled, due to the overwhelming amount of information they were being provided and the stressful circumstances in which they signed consent forms. This contradicts the expectation of patients’ and caregivers’ consent being “informed.” ^46,47 To help families become better informed about clinical trials in which the patient is enrolled, we suggest providing details about these clinical trials to patients/caregivers so that those details can be reviewed when they have time. This should also help orient families to the “roadmap” of the treatment plans, which they may have forgotten in the rush to get the treatments started.

Consent forms should be scanned and made available to patients/caregivers, so that they can read the forms they signed and be reminded of the details of the clinical trials. Further, linking to additional details about clinical trials on websites such as CliniclTrials.gov, where trials are registered with a unique identifier, should be straightforward. We acknowledge that much of the information on ClinicalTrials.gov is too complex for most families, ⁴⁸ but it represents a first step in properly informing families about the clinical trials in which their child is enrolled.

Recommendation 3: Provide Information About the Care Team

In their interviews, patients/caregivers frequently described problems identifying members of their care team. Because the members of the care teams rotate on various schedules, it can be difficult to keep track of new faces as they appear and to know the roles of each person in a large healthcare team. At a minimum, families should have a resource that allows them to view a photograph, the name, and the role of all members of the care team. Ideally, active members of the care team should be highlighted, although implementing this feature may be challenging, because such real-time “on-service” data for faculty, staff, and trainees are not typically centrally tracked. Many hospitals already have web pages with physician photographs and biographies, and this should be expanded to every member of the care team (nurses, pharmacists, etc.). The Joint Commission suggests that patients “remind staff to identify themselves” as a safety measure, and our recommendation is a logical extension of this suggestion. ⁴⁹

Recommendation 4: Help Families Prepare for Discharge

The move from the inpatient to the outpatient setting is a major transition for families, who often feel unprepared, and much of the information necessary for this transition is conveyed verbally to families in a rushed state during the last week of the patient’s hospital stay. ^50–52 Providing real-time access to current inpatient medications along with educational information about each medication could help with transitioning the patient from inpatient to outpatient care. Many medications that the patient is required to take during their hospital stay are also required upon discharge, and it is essential that patients/caregivers know each medication’s purpose, method of administration, and expected side effects. Additional information, such as how to properly care for central lines, could be provided to patients/caregivers in the form of video tutorials. Finally, discharge criteria used by the clinical team should be made available to patients/caregivers in a form that can be continuously updated, so that families can better track their progress towards the goal of going home.

Limitations

Our study has several limitations that should be noted. We studied pediatric HSCT patients/caregivers at a single medical center; similar patients/caregivers at other centers may have different informational needs. However, our clinical experience suggests that many of the needs we identified are universal. ^45,53 We utilized semi-structured interviews as one means of data collection for this study. As in any interview, all subjects’ responses to interview questions are subject to bias. We tried to minimize bias by conducting subject interviews without any healthcare providers in the room, so that caregivers and patients felt comfortable sharing their views.

Additionally, we did not address all the important issues related to informational needs, such as whether patients/caregivers should have access to the daily inpatient clinical notes. ⁵⁴ Although there are clearly benefits to allowing patients access to their clinical notes, HSCT notes are very complex and may be very difficult for caregivers and patients to interpret. Future work should explore this issue.

CONCLUSION

In this paper, we present informational challenges for pediatric HSCT patients/caregivers during the month-long HSCT inpatient hospital stay. Many of these informational needs can be met with a health IT system that integrates data from multiple sources, including EHRs. Meeting patients’ and caregivers’ informational needs could lead to reduced anxiety for patients and caregivers, reduced information asymmetry between patients/caregivers and the healthcare team, a greater feeling of inclusion and empowerment for patients and caregivers, and, ultimately, patient/caregiver engagement in the care process. We believe our findings could apply to many other medically complex populations that undergo prolonged inpatient hospitalizations, including patients undergoing solid organ transplants. Based on the informational needs identified in our study, we recommend developing a health IT system to support patient/caregiver engagement in five major areas: (1) laboratory results, (2) medications, (3) identification of healthcare providers, (4) clinical trial information, and (5) outpatient management skills. Although there are multiple ongoing initiatives to put recommended interventions in place for individuals with complex healthcare needs in the ambulatory care setting, ⁵⁵ there are gaps in the development of health IT applications in hospital-based settings. ² The vast majority of available health IT applications that serve to bridge the gap between patients/caregivers and providers have been in the outpatient setting, through portals, which have been shown to enhance communication between patients/caregivers and providers, increase patients’ and caregivers’ overall satisfaction with care, expand patients’ and caregivers’ access to health information, improve patients’ and caregivers’ disease management, and positively impact patient outcomes. ^6,56 Thus, the novelty of our study was two-fold, providing: (1) a description of patient/caregiver informational needs from the perspective of a previously unexplored pediatric HSCT population, and (2) a model of patient/caregiver informational needs that can be applied by clinicians, health informaticists, human-computer interaction specialists, hospital management, and regulatory stakeholders.

To our knowledge, there is a lack of published literature addressing the development of health IT systems to support engagement in this particular population (pediatric HSCT patients) and setting (inpatient). Future work is needed to implement tailored or personalized health IT systems based on our suggestions, then solicit feedback from pediatric HSCT patients/caregivers about how well their informational needs are being met.