My Kidney Identity: Contextualizing pediatric patients and their families kidney transplant journeys.

BACKGROUND: Even though having a kidney transplant is the treatment of choice for children with kidney failure, it can cause anxiety for patients and their families resulting in decreased psychosocial functioning, adherence, and self-management. We set out to identify the information needs required to help pediatric patients and their families contextualize their posttransplant experiences as they recalibrate their understanding of normalcy throughout their transplant journey. METHODS: Participants submitted photographs related to feeling: (1) worried, (2) confident, (3) similar to peers without kidney disease, and (4) different from these peers. The photographs served as a foundation for an in-depth interview. RESULTS: Nineteen individuals (10 pediatric transplant recipients and 9 caregivers) were interviewed at a mean of 8 years posttransplant. We identified five specific themes and tensions our participants associated with recalibrating their version of "normal" throughout the transplant journey: (1) exchanging information (information consumers vs. information contributors, (2) transitional management (family management vs. self-management), (3) building confidence (worry vs. confidence), (4) telling one's story (hiding vs. self-expression), and (5) normalizing kidney transplantation (feeling different vs. feeling similar). These five themes/tensions form one's Kidney Identity, shift from negative to positive throughout the transplant journey, illustrating a more abstract and complex account of kidney transplantation over time. CONCLUSIONS: Having a patient view their Kidney Identity over time may support self-reflection of one's progress posttransplant and potentially help clinicians, patients, and their caregivers identify barriers and areas where they may need more support to ensure their successful engagement in their care.

Influence of Blood Pressure Percentile Reporting on the Recognition of Elevated Blood Pressures.

OBJECTIVES: To explore the impact of displaying blood pressure (BP) percentiles with BP readings in the electronic health record (EHR) on the recognition of children with elevated blood pressures (EBPs). METHODS: This was a retrospective cohort study of children (ages 1-17), including inpatients and outpatients, with at least 1 EHR noninvasive BP recording. In phase 1, BP percentiles were calculated, stored, and not displayed to clinicians. In phase 2, percentiles were displayed adjacent to the EHR BP. Encounters with 1 BP ≥95th percentile were classified as elevated. EBP recognition required the presence of at least 1 EBP-related International Classification of Diseases, Ninth Revision or International Classification of Diseases, 10th Revision code. We compared recognition frequencies across phases with logistic regression. RESULTS: In total, 45 504 patients in 115 060 encounters were included. Inpatient recognition was 4.1% (238 of 5572) in phase 1 and 5.5% (338 of 5839) in phase 2. The adjusted odds ratio (OR) associated with the intervention was 1.22 (95% confidence interval [CI]: 0.90-1.66). Outpatient recognition rates were 8.0% (1096 of 13 725 EBP encounters) in phase 1 and 9.7% (1442 of 14 811 encounters) in phase 2. The adjusted OR was 1.296 (95% CI: 0.999-1.681). Overall, recognition rates were higher in boys (outpatient OR: 1.51; 95% CI: 1.15-1.98) and older children (outpatient/inpatient OR: 1.08/1.08; 95% CI: 1.05-1.11/1.05-1.11) and lower for those on a surgical service (outpatient/inpatient: OR: 0.41/0.38; 95% CI: 0.30-0.58/0.27-0.52). CONCLUSIONS: Addition of BP percentiles to the EHR did not significantly change EBP recognition as measured by the addition of an EBP diagnosis code. Girls, younger children, and patients followed on a surgical service were less likely to have their EBP recognized by providers.

Different roles with different goals: Designing to support shared situational awareness between patients and clinicians in the hospital.

OBJECTIVE: Team situational awareness helps to ensure high-quality care and prevent errors in the complex hospital environment. Although extensive work has examined factors that contribute to breakdowns in situational awareness among clinicians, patients' and caregivers' roles have been neglected. To address this gap, we studied team-based situational awareness from the perspective of patients and their caregivers. MATERIALS AND METHODS: We utilized a mixed-methods approach, including card sorting and semi-structured interviews with hospitalized patients and their caregivers at a pediatric hospital and an adult hospital. We analyzed the results utilizing the situational awareness (SA) theoretical framework, which identifies 3 distinct stages: (1) perception of a signal, (2) comprehension of what the signal means, and (3) projection of what will happen as a result of the signal. RESULTS: A total of 28 patients and 19 caregivers across the 2 sites participated in the study. Our analysis uncovered how team SA helps patients and caregivers ensure that their values are heard, their autonomy is supported, and their clinical outcomes are the best possible. In addition, our participants described both barriers-such as challenges with communication-and enablers to facilitating shared SA in the hospital. DISCUSSION: Patients and caregivers possess critical knowledge, expertise, and values required to ensure successful and accurate team SA. Therefore, hospitals need to incorporate tools that facilitate patients and caregivers as key team members for effective SA. CONCLUSIONS: Elevating patients and caregivers from passive recipients to equal contributors and members of the healthcare team will improve SA and ensure the best possible outcomes.

Reflecting on patient-generated photographs of the pediatric renal transplant experience.

BACKGROUND AND OBJECTIVES: Poor self-management contributes to reduced renal allograft survival during adolescence and young adulthood. Providing patients with self-reflection tools to help explore the question "Is my experience normal?" may help mitigate these challenges. We explore Photograph-elicitation, a qualitative method where images are used to prompt individuals to talk about their personal experiences and values, engages pediatric transplant recipients and their families to generate insight into their experiences and the challenges they face after transplant. DESIGN, SETTING, PARTICIPANTS, AND MEASUREMENTS: Pediatric renal transplant recipients and one family member from Seattle Children's Hospital submitted 5 photographs showcasing their transplant story, which were used as prompts during semi-structured interviews. Interviews were recorded, transcribed, and analyzed using thematic analysis. RESULTS: Twenty-four individuals (13 patients: ages 7-21, and 11 parents) completed the study. Conversations generated by the photographs covered topics in more depth than a routine clinical encounter leading to more opportunities for reflection by patients and their family. The photographs generated conversations on four emergent themes: (a) sensemaking; (b) transitions and agency; (c) social interactions and community engagement; and (d) barriers and obstacles. CONCLUSIONS: Photograph elicitation generated a rich dataset describing a range of pediatric renal transplant experiences helping physicians gain a rich and nuanced understanding of the daily lives and experiences of their patients outside the clinical setting. Photograph elicitation, as a clinical intervention, may provide new opportunities to address previously unrecognized modifiable risk factors, improving graft survival and health-related quality of life.

Acute kidney injury and chronic kidney disease after non-kidney solid organ transplantation.

BACKGROUND: SOT is the treatment of choice for end-stage organ disease. Improved long-term survival after NKSOT has uncovered chronic morbidity including CKD. AKI is common after NKSOT and may be associated with long-term CKD. METHODS: We performed a retrospective cohort study looking at AKI and CKD after pediatric heart (n = 109) or liver (n = 112) transplant. AKI was defined using KDIGO creatinine-based criteria. pAKI was AKI ≤ 7 days post-transplant; CKD3-5 was eGFR < 60 mL/min/1.73 m2 by modified Schwartz formula for > 3 months. We looked at the incidence of CKD3-5 and the effect of perioperative pAKI on the slope of eGFR post-transplant. RESULTS: pAKI was seen in 63% (n = 69) after heart and 38% (n = 43) after liver transplant. pAKI was associated with longer ICU and hospital stays. Cumulative incidence (95% CI) of CKD3-5 at 60 months post-heart transplant was 40.9% (27.9%-57.1%) in patients with AKI vs 35.8% (17.1%-64.8%) in those without (P = NS). Post-liver transplant, the cumulative incidence of CKD3-5 at 60 months was 0% in those without pAKI vs 10% (3.2%-29.3%) in those with (P = .01). Patients with pAKI had lower eGFR at last follow-up. CONCLUSION: pAKI and CKD are common after NKSOT. Incidence of CKD is higher in those with pAKI. AKI episodes are associated with a drop in eGFR during follow-up. Identifying patients who have had AKI is an important first step in identifying those at risk of repeated AKI episodes. These patients would benefit from closer monitoring for CKD, lower nephrotoxic drug use, and follow-up with nephrology.

Use and impact of an online community for hospital patients.

OBJECTIVE: Although patient-peer support technologies have demonstrated effectiveness in a variety of health contexts-including diabetes, weight loss, and cancer-less is known about how hospitalized patients can benefit from this support. We investigated the nature of peer support in the hospital and the impact this support had on patients' hospital stays. MATERIALS AND METHODS: We created a technology, resembling an online health community, in which patients could exchange advice about their hospitalization. We deployed it at 1 pediatric hospital and 1 adult hospital. With 30 participants, we conducted bedside interviews, observed how they used the technology during their hospitalization, and completed follow-up phone interviews. RESULTS: Participants shared advice about several topics, including adjusting to the hospital and building relationships with providers. Contrary to concerns that such a system would primarily serve as a place for patients to "complain," sentiment analysis showed that 23 of 36 (64%) of the shared advice reflected positive sentiment. Patients also reported positive impacts to their quality, safety, and hospital experience due to the inpatient peer support community. DISCUSSION: Participants benefited from peer support that transcended diagnoses and individual health conditions. The shared experience of being in the hospital was sufficient to yield valuable and practical peer support. Participants who did not contribute their own advice still experienced benefits from reading their peers' advice. CONCLUSIONS: Our study demonstrated the positive nature of peer advice exchanged, and the benefits of this advice on patients' hospital stays. Inpatient peer support technologies could be an additional resource for patients to engage in their care.

Association of Health Record Visualizations With Physicians' Cognitive Load When Prioritizing Hospitalized Patients.

Importance: Current electronic health records (EHRs) contribute to increased physician cognitive workload when completing clinical tasks. Objective: To assess the association of different design features of an EHR-based information visualization tool with the cognitive load of physicians during the clinical prioritization process. Design, Setting, and Participants: This cross-sectional study included a convenience sample of 29 attending physicians at Seattle Children's Hospital, a large tertiary academic pediatric hospital. Data collection took place from August 2017 through October 2017, and analysis occurred from August to October 2018. Exposure: Physician participants used 3 prototypes with novel visualizations of simulated EHR data that highlighted 1 of 3 key patient characteristics, as follows: (1) acuity, (2) clinical problem list, and (3) clinical change. Main Outcomes and Measures: Cognitive workload was measured using the NASA Task Load Index (TLX) scale (range, 1-100, with lower scores indicating lower cognitive workload). Cognitive workload was assessed for the 2 following clinical prioritization tasks: (1) finding information for a specific patient and (2) comparing results among patients for each prototype. Participants ranked 5 hypothetical patients from having the highest to the lowest priority in each design. Results: A total of 29 physician participants (15 [52%] men; 14 [48%] women; mean [range] age, 43 [35-58] years; mean [range] time in practice, 11 [3-30] years) completed the study. For task 1, the prototype highlighting clinical change was associated with lower median (interquartile range) NASA TLX scores compared with the prototype highlighting acuity (30.3 [15.2-41.6] vs 48.5 [18.7-59.3]; P = .02). For task 2, the prototype highlighting clinical change was associated with lower median (interquartile range) NASA TLX scores compared with the prototype highlighting the clinical problem list (29.1 [16.3-50.8] vs 43.5 [26.6-55.9]; P = .02). The prototype highlighting clinical change had the lowest TLX score in 17 of 29 rankings (59%) for task 1 (χ24 = 24.4; P < .001) and 18 of 29 rankings (62%) for task 2 (χ24 = 17.2; P = .002). Conclusions and Relevance: In this study, well-designed EHR-based information visualizations that highlighted and featured clinically meaningful information patterns significantly reduced physician cognitive workload when prioritizing patient needs.

Designing Inpatient Portals to Support Patient Agency and Dynamic Hospital Experiences.

Inpatient portals could help patients engage in their hospital care, yet several design, usability, and adoption issues prevent this technology from fulfilling its potential. Despite patients having needs that extend beyond the scope of existing inpatient portals, we know less about how to design such portals that support them. To learn about effective designs, we created three mid-fidelity prototypes representing novel approaches for inpatient portal design. Then, we conducted interviews with 21 pediatric and adult inpatients to gather their feedback on these prototypes. Participants shared how the prototypes addressed the following needs: forming active partnerships, navigating relationships and power dynamics with clinicians, understanding complexity of care, contextualizing health information, increasing efficiency of communication, and preventing lost information. We discuss two key implications-supporting patients' agency and dynamic needs throughout their hospital care-for the future of inpatient portal designs.

Informatics opportunities to involve patients in hospital safety: a conceptual model.

OBJECTIVE: Inpatients could play an important role in identifying, preventing, and reporting problems in the quality and safety of their care. To support them effectively in that role, informatics solutions must align with their experiences. Thus, we set out to understand how inpatients experience undesirable events (UEs) and to surface opportunities for those informatics solutions. MATERIALS AND METHODS: We conducted a survey with 242 patients and caregivers during their hospital stay, asking open-ended questions about their experiences with UEs. Based on our qualitative analysis, we developed a conceptual model representing their experiences and identified informatics opportunities to support patients. RESULTS: Our 4-stage conceptual model illustrates inpatient experiences, from when they first encounter UEs, when they could intervene, when harms emerge, what types of harms they experience, and what they do in response to harms. DISCUSSION: Existing informatics solutions address the first stage of inpatients' experiences by increasing their awareness of potential UEs. However, future researchers can explore new opportunities to fill gaps in support that patients experience in subsequent stages, especially at critical decision points such as intervening in UEs and responding to harms that occur. CONCLUSIONS: Our conceptual model reveals the complex inpatient experiences with UEs, and opportunities for new informatics solutions to support them at all stages of their experience. Investigating these new opportunities could promote inpatients' participation and engagement in the quality and safety of their care, help healthcare systems learn from inpatients' experience, and reduce these harmful events.

Using Electronic Health Record Data to Rapidly Identify Children with Glomerular Disease for Clinical Research.

BACKGROUND: The rarity of pediatric glomerular disease makes it difficult to identify sufficient numbers of participants for clinical trials. This leaves limited data to guide improvements in care for these patients. METHODS: The authors developed and tested an electronic health record (EHR) algorithm to identify children with glomerular disease. We used EHR data from 231 patients with glomerular disorders at a single center to develop a computerized algorithm comprising diagnosis, kidney biopsy, and transplant procedure codes. The algorithm was tested using PEDSnet, a national network of eight children's hospitals with data on >6.5 million children. Patients with three or more nephrologist encounters (n=55,560) not meeting the computable phenotype definition of glomerular disease were defined as nonglomerular cases. A reviewer blinded to case status used a standardized form to review random samples of cases (n=800) and nonglomerular cases (n=798). RESULTS: The final algorithm consisted of two or more diagnosis codes from a qualifying list or one diagnosis code and a pretransplant biopsy. Performance characteristics among the population with three or more nephrology encounters were sensitivity, 96% (95% CI, 94% to 97%); specificity, 93% (95% CI, 91% to 94%); positive predictive value (PPV), 89% (95% CI, 86% to 91%); negative predictive value, 97% (95% CI, 96% to 98%); and area under the receiver operating characteristics curve, 94% (95% CI, 93% to 95%). Requiring that the sum of nephrotic syndrome diagnosis codes exceed that of glomerulonephritis codes identified children with nephrotic syndrome or biopsy-based minimal change nephropathy, FSGS, or membranous nephropathy, with 94% sensitivity and 92% PPV. The algorithm identified 6657 children with glomerular disease across PEDSnet, ≥50% of whom were seen within 18 months. CONCLUSIONS: The authors developed an EHR-based algorithm and demonstrated that it had excellent classification accuracy across PEDSnet. This tool may enable faster identification of cohorts of pediatric patients with glomerular disease for observational or prospective studies.

Creating synthetic patient data to support the design and evaluation of novel health information technology.

To ensure that new health information technology supports its intended users, researchers and developers need to follow human-centered methods during all stages of the software development lifecycle, including early stage evaluations. These evaluations need to include realistic testing scenarios to ensure that they provide valuable and accurate feedback to system developers. However, obtaining realistic patient data to support these evaluations has many challenges, including the risk of re-identifying anonymized patients as well as the costs associated with connecting test systems with production ready clinical databases. Here we present a novel five-step process to create highly structured and realistic synthetic patient data to support the evaluation and comparison of early to middle stage health information technology prototypes. We applied this method to evaluate and compare three novel health information technology prototypes designed to support clinicians during the identification of high-priority patients when answering the question: "What patient should I see first?" Our novel approach fills an important gap in the evaluation of health information technology and assists designers in creating high-quality software that best supports its end users.

The Value of Patient-Peer Support in Improving Hospital Safety.

Healthcare systems worldwide have dedicated several years, special attention, and action toward improving safety for their patients. Although many innovative technological solutions have helped providers reduce medical errors, hospitalized patients lack access to these solutions, and face difficulties in having a proactive role in their safety. In this paper, we examine how patient-peer support can be a valuable resource for patients in the context of hospital safety. Through semi-structured interviews with 30 patients and caregivers at a pediatric and an adult hospital, we identify the potential benefits of incorporating patient-peer support into patient-facing technologies. Facilitating such support can provide patients with new avenues for engaging in, and improving, the quality and safety of their hospital care.

Supporting Collaborative Health Tracking in the Hospital: Patients' Perspectives.

The hospital setting creates a high-stakes environment where patients' lives depend on accurate tracking of health data. Despite recent work emphasizing the importance of patients' engagement in their own health care, less is known about how patients track their health and care in the hospital. Through interviews and design probes, we investigated hospitalized patients' tracking activity and analyzed our results using the stage-based personal informatics model. We used this model to understand how to support the tracking needs of hospitalized patients at each stage. In this paper, we discuss hospitalized patients' needs for collaboratively tracking their health with their care team. We suggest future extensions of the stage-based model to accommodate collaborative tracking situations, such as hospitals, where data is collected, analyzed, and acted on by multiple people. Our findings uncover new directions for HCI research and highlight ways to support patients in tracking their care and improving patient safety.

Using dynamic treatment regimes to understand erythropoietin-stimulating agent hyporesponsiveness.

BACKGROUND: Erythropoietin-stimulating agent hyporesponsiveness (ESAH) is associated with increased cardiovascular mortality in patients with end-stage renal disease (ESRD) on hemodialysis. Dynamic treatment regimes (DTR), a clinical decision support (CDS) tool that guides the prescription of specific therapies in response to variations in patient states, have been used to guide treatment for chronic illnesses that require frequent monitoring and therapy changes. Our objective is to explore the role of utilizing a DTR to reduce ESAH in pediatric hemodialysis patients. METHODS: Retrospective analysis of ESRD patients on hemodialysis who received ESAs. Dosing was adjusted using a locally developed protocol designed to target a hemoglobin between 10 and 12 g/dl. Analyzing this protocol as a DTR, we assessed adherence to the protocol over time measuring how the hyporesponse index (ESA dose/hemoglobin value) changed due to varying levels of adherence. RESULTS: Eighteen patients met study criteria. Median hemoglobin was 11.4 g/dl (range 6.1-15.4), and median weekly ESA dose (darbepoetin-equivalent) was 0.4 mcg/kg/dose (range 0-2.1). Full adherence to the DTR was identified in 266 (71%) of the 4-week periods, with a median average adherence score of 0.80 (range 0.63-0.91). As adherence to the DTR improved, ESAH decreased. During the last 12 weeks, 13 out of 18 patients had lower average ESA/hemoglobin ratio than the first 12 weeks. CONCLUSIONS: A DTR appears to be well-suited to the treatment of anemia in ESRD and reduces ESAH. Our work shows the potential of DTRs to drive the development and evaluation of clinical practice guidelines.

Exploring the Design of an Inpatient Peer Support Tool: Views of Adult Patients.

Despite wide recognition of the value, expertise, and support that patient-peers provide in a variety of health contexts, mechanisms to design and enable peer support in the inpatient setting have not been sufficiently explored. To better understand the opportunities for an inpatient peer support tool, we surveyed 100 adult patients and caregivers, and conducted follow-up, semi-structured interviews with 15 adult patients. In this paper, we describe five key peer support needs that our adult patient participants expressed: (1) adjusting to the hospital environment, (2) understanding and normalizing medical care, (3) communicating with providers, (4) reporting and preventing medical errors, and (5) empowering peers. In addition, we identify privacy concerns, situational impairments, and communication mode as barriers to, and preferences for, interacting with peers. Based on our findings, we discuss intelligent peer matching and aggregating peer data as design recommendations for future inpatient peer support tools.

Must We Bust the Trust?: Understanding How the Clinician-Patient Relationship Influences Patient Engagement in Safety.

Although patients desire safe care, they are reluctant to perform safety-related behaviors when they worry it could harm the relationships they have with clinicians. This influence of the clinician-patient relationship on patient engagement in safety is poorly understood, and most patient-facing safety interventions ignore its influence, focusing instead on helping patients access information about their care and report errors. We conducted semi-structured interviews with hospitalized patients to uncover their needs for patient-facing information systems that could help them prevent medical errors. We found that the clinician-patient relationship could either encourage or discourage patients and caregivers from engaging in patient safety actions. We describe our findings and discuss the implications for the design of patient-facing interventions to promote patient engagement in safety. Our findings shed light on how patient-facing safety interventions can be designed to effectively engage patients and caregivers.

Opportunities and Design Considerations for Peer Support in a Hospital Setting.

Although research has demonstrated improved outcomes for outpatients who receive peer support-such as through online health communities, support groups, and mentoring systems-hospitalized patients have few mechanisms to receive such valuable support. To explore the opportunities for a hospital-based peer support system, we administered a survey to 146 pediatric patients and caregivers, and conducted semi-structured interviews with twelve patients and three caregivers in a children's hospital. Our analysis revealed that hospitalized individuals need peer support for five key purposes: (1) to ask about medical details-such as procedures, treatments, and medications; (2) to learn about healthcare providers; (3) to report and prevent medical errors; (4) to exchange emotional support; and (5) to manage their time in the hospital. In this paper, we examine these themes and describe potential barriers to using a hospital-based peer support system. We then discuss the unique opportunities and challenges that the hospital environment presents when designing for peer support in this setting.

Closing the Gap: Supporting Patients' Transition to Self-Management after Hospitalization.

Patients going home after a hospitalization face many challenges. This transition period exposes patients to unnecessary risks related to inadequate preparation prior to leaving the hospital, potentially leading to errors and patient harm. Although patients engaging in self-management have better health outcomes and increased self-efficacy, little is known about the processes in place to support and develop these skills for patients leaving the hospital. Through qualitative interviews and observations of 28 patients during and after their hospitalizations, we explore the challenges they face transitioning from hospital care to self-management. We identify three key elements in this process: knowledge, resources, and self-efficacy. We describe how both system and individual factors contribute to breakdowns leading to ineffective patient management. This work expands our understanding of the unique challenges faced by patients during this difficult transition and uncovers important design opportunities for supporting crucial yet unmet patient needs.

Partners in Care: Design Considerations for Caregivers and Patients During a Hospital Stay.

Informal caregivers, such as close friends and family, play an important role in a hospital patient's care. Although CSCW researchers have shown the potential for social computing technologies to help patients and their caregivers manage chronic conditions and support health behavior change, few studies focus on caregivers' role during a multi-day hospital stay. To explore this space, we conducted an interview and observation study of patients and caregivers in the inpatient setting. In this paper, we describe how caregivers and patients coordinate and collaborate to manage patients' care and wellbeing during a hospital stay. We define and describe five roles caregivers adopt: companion, assistant, representative, navigator, and planner, and show how patients and caregivers negotiate these roles and responsibilities throughout a hospital stay. Finally, we identify key design considerations for technology to support patients and caregivers during a hospital stay.