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.
Abstract
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.
Abstract
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.
Cardiac allograft vasculopathy (CAV) is an important cause of morbidity and mortality among cardiac transplant recipients. CAV occurs in approximately 30% of patients by 5 years and 50% by 10 years, ...and is a major cause of graft loss and death. Early detection of CAV is important because it may allow alterations in medical therapy before progression to the stage that revascularization is required. This has led to routine screening for CAV in transplant recipients, traditionally by invasive coronary angiography (ICA). Recent advances in imaging technology, specifically intravascular ultrasound, now also permit detection of subangiographic CAV. Noninvasive stress testing and multislice coronary computed tomography angiography have been investigated as noninvasive alternatives to routine ICA. However, currently available noninvasive tests remain limited with respect to their sensitivity and specificity for CAV. Given the multiple available diagnostic modalities, no consensus definition for the classification of CAV has been widely accepted, although new guidelines that rely heavily on ICA have recently been published by the International Society of Heart and Lung Transplantation. This review summarizes imaging modalities that are utilized in the diagnosis and surveillance of CAV and explores newer imaging techniques that may play a future role.
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.
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.
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•User-centered design can significantly improve health information technology.•Need realistic clinical scenarios to effectively evaluate early stage prototypes.•Processes to generate ...synthetic testing data require rigorous methods.•Synthetic data needs specific structure to support cognitive evaluations.•User-centered evaluations should occur throughout the design process.
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.
A study by Kharbanda et al explores how a clinical decision support (CDS) tool, a key driver for the development and adoption of health care information, embedded within a clinic's electronic health ...record might increase the rate of hypertension recognition and management. The TeenBP CDS developed by Kharbanda et al and subsequently studied, is the most comprehensive and well-integrated pediatric BP CDS described to date. The authors have developed a well-thought-out and effective CDS tool that more than doubled the rate of recognition compared with standard practice.
Abstract
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.
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 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.
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