User-centered design of a longitudinal care plan for children with medical complexity.
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ABSTRACT: Objective
To determine the content priorities and design preferences for a longitudinal care plan (LCP) among caregivers and healthcare providers who care for children with medical complexity (CMC) in acute care settings.Materials and methods
We conducted iterative one-on-one design sessions with CMC caregivers (ie, parents/legal guardians) and providers from 5 groups: complex care, primary care, subspecialists, emergency care, and care coordinators. Audio-recorded sessions included content categorization activities, drawing exercises, and scenario-based testing of an electronic LCP prototype. We applied inductive content analysis of session materials to elicit content priorities and design preferences between sessions. Analysis informed iterative prototype revisions.Results
We conducted 30 design sessions (10 with caregivers, 20 with providers). Caregivers expressed high within-group variability in their content priorities compared to provider groups. Emergency providers had the most unique content priorities among clinicians. We identified 6 key design preferences: a familiar yet customizable layout, a problem-based organization schema, linked content between sections, a table layout for most sections, a balance between unstructured and structured data fields, and use of family-centered terminology.Discussion
Findings from this study will inform enhancements of electronic health record-embedded LCPs and the development of new LCP tools and applications. The design preferences we identified provide a framework for optimizing integration of family and provider content priorities while maintaining a user-tailored experience.Conclusion
Health information platforms that incorporate these design preferences into electronic LCPs will help meet the information needs of caregivers and providers caring for CMC in acute care settings.
SUBMITTER: Desai AD
PROVIDER: S-EPMC7727350 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundAlthough eHealth technology makes it possible to improve the management of complex health care systems and follow up on chronic patients, it is not without challenges, thus requiring the development of efficient programs and graphic user interface (GUI) features. Similar information technology tools are crucial, as health care populations are going to have to endure social distancing measures in the forthcoming months and years.ObjectiveThis study aims to provide adequate and personalized support to complex health care populations by developing a specific web-based mobile app. The app is designed around the patient and adapted to specific groups, for example, people with complex or rare diseases, autism, or disabilities (especially among children) as well as Alzheimer or senile dementia. The app's core features include the collection, labeling, analysis, and sorting of clinical data. Furthermore, it authorizes a network of people around the patient to securely access the data contained in his or her electronic health record.MethodsThe application was designed according to the paradigms of patient-centered care and user-centered design (UCD). It considers the patient as the main empowered and motivating factor in the management of his or her well-being. Implementation was informed through a family needs and technology perception assessment. We used 3 interdisciplinary focus groups and 2 assessment surveys to study the contexts of app use, subpopulation management, and preferred functions. Finally, we developed an observational study involving 116 enrolled patients and 253 system users, followed by 2 feedback surveys to evaluate the performance and impact of the app.ResultsIn the validated general GUI, we developed 10 user profiles with different privacy settings. We tested 81 functions and studied a modular structure based on disease or medical area. This allowed us to identify replicable methods to be applied to module design. The observational study not only showed good family and community engagement but also revealed some limitations that need to be addressed. In total, 42 of 51 (82%) patients described themselves as satisfied or very satisfied. Health care providers reported facilitated communication with colleagues and the need to support data quality.ConclusionsThe experimented solution addressed some of the health system challenges mentioned by the World Health Organization: usability appears to be significantly improved when the GUI is designed according to patients' UCD mental models and when new media and medical literacy are promoted. This makes it possible to maximize the impact of eHealth products, thereby overcoming some crucial gaps reported in the literature. Two main features seemed to have potential benefit compared with other eHealth products: the modeling, within the app, of both the formal and informal health care support networks and the modular structure allowing for comorbidity management, both of which require further implementation.
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Project description:IntroductionEngaging patients and frontline clinicians in re-designing clinical care is essential for improving care delivery in a complex clinical environment. This study sought to assess an innovative user-centered design approach to improving clinical care quality, focusing on the use cases of de-intensifying non-beneficial care within the following areas: (1) de-intensifying diabetes treatment in high-risk patients; (2) stopping screening for carotid artery stenosis in asymptomatic patients; and (3) stopping colorectal cancer screening in average-risk, older adults.MethodsThe user-centered design approach, consisting of patient and patient-clinician charrettes (defined as intensive workshops where key stakeholders collaborate to develop creative solutions to a specific problem) and participant surveys, has been described previously. Following the charrettes, we used inductive coding to identify and categorize themes emerging from the de-intensification ideas prioritized by participants as well as facilitator notes and audio recordings from the charrettes.ResultsThirty-five patients participated in the patient design charrettes, generating 134 unique de-intensification ideas and prioritizing 32, which were then distilled into six patient-generated principles of de-intensification by the study team. These principles provided a starting point for a subsequent patient-clinician charrette. In this follow-up charrette, 9 patients who had participated in an earlier patient design charrette collaborated with 7 clinicians to generate 63 potential de-intensification solutions. Six of these potential solutions were developed into multi-faceted, fully operationalized de-intensification strategies.DiscussionThe de-intensification strategies that patients and clinicians prioritized and operationalized during the co-design charrette process were detailed and multi-faceted. Each component of a strategy had a rationale based on feasibility, practical considerations, and ways of overcoming barriers. The charrette-based process may be a useful way to engage clinicians and patients in developing the complex and multi-faceted strategies needed to improve care delivery.
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Project description:BackgroundChildren with medical complexity (CMC) are prone to medical errors and longer hospital stays, while residents do not feel prepared to provide adequate medical care for this vulnerable population. No educational guidance for the training of future pediatric tertiary care specialists outside their field of expertise involving the multidisciplinary care of CMC exists. We investigated pediatric residents past educational needs and challenges to identify key learning content for future training involving care for CMC.MethodsThis was a prospective mixed-methods study at a single pediatric tertiary care center. Qualitative semi-structured interviews with residents were conducted, submitted to thematic content analysis, linked to the American Board of Pediatrics (ABP) general pediatrics content outline, and analyzed with importance performance analysis (IPA). Quantitative validation was focused on key themes of pediatric nephrology within the scope of an online survey among pediatric residents and specialists.ResultsA total of 16 interviews, median duration 69 min [interquartile range IQR 35], were conducted. The 280 listed themes of the ABP general pediatrics content outline were reduced to 165 themes, with 86% (theoretical) knowledge, 12% practical skills, and 2% soft skills. IPA identified 23 knowledge themes to be of high importance where improvement is necessary and deemed fruitful. Quantitative validation among 84 residents and specialists (response rate 55%) of key themes in nephrology yielded high agreement among specialists in pediatric nephrology but low interrater agreement among trainees and "trained" non-nephrologists. The occurrence of themes in the qualitative interviews and their calculated importance in the quantitative survey were highly correlated (tau = 0.57, p = 0.001). Two clusters of high importance for other pediatric specialties emerged together with a contextual cluster of frequent encounters in both in- and outpatient care.ConclusionRegarding patient safety, this study revealed the heterogeneous aspects and the importance of training future pediatric tertiary care specialists outside their field of expertise involving the multidisciplinary care of CMC. Our results may lay the groundwork for future detailed analysis and development of training boot camps that might be able to aid the improvement of patient safety by decreasing preventable harm by medical errors, especially for vulnerable patient groups, such as CMC in tertiary care pediatrics.
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Project description:BACKGROUND:Overtreatment and overtesting expose patients to unnecessary, wasteful, and potentially harmful care. Reducing overtreatment or overtesting that has become ingrained in current clinical practices and is being delivered on a routine basis will require solutions that incorporate a deep understanding of multiple perspectives, particularly those on the front lines of clinical care: patients and their clinicians. Design approaches are a promising and innovative way to incorporate stakeholder needs, desires, and challenges to develop solutions to complex problems. OBJECTIVE:This study aimed (1) to engage patients in a design process to develop high-level deintensification strategies for primary care (ie, strategies for scaling back or stopping routine medical services that more recent evidence reveals are not beneficial) and (2) to engage both patients and primary care providers in further co-design to develop and refine the broad deintensification strategies identified in phase 1. METHODS:We engaged stakeholders in design charrettes-intensive workshops in which key stakeholders are brought together to develop creative solutions to a specific problem-focused on deintensification of routine overuse in primary care. We conducted the study in 2 phases: a 6.5-hour design charrette with 2 different groups of patients (phase 1) and a subsequent 4-hour charrette with clinicians and a subgroup of phase 1 patients (phase 2). Both phases included surveys and educational presentations related to deintensification. Phase 1 involved several design activities (mind mapping, business origami, and empathy mapping) to help patients gain a deeper understanding of the individuals involved in deintensification. Following that, we asked participants to review hypothetical scenarios where patients, clinicians, or the broader health system context posed a barrier to deintensification and then to brainstorm solutions. The deintensification themes identified in phase 1 were used to guide phase 2. This second phase primarily involved 1 design activity (WhoDo). In this activity, patients and clinicians worked together to develop concrete actions that specific stakeholders could take to support deintensification efforts. This activity included identifying barriers to the actions and approaches to overcoming those barriers. RESULTS:A total of 35 patients participated in phase 1, and 9 patients and 7 clinicians participated in phase 2. The analysis of the deintensification strategies and survey data is currently underway. The results are expected to be submitted for publication in early 2020. CONCLUSIONS:Health care interventions are frequently developed without input from the people who are most affected. The exclusion of these stakeholders in the design process often influences and limits the impact of the intervention. This study employed design charrettes, guided by a flexible user-centered design model, to bring clinicians and patients with differing backgrounds and with different expectations together to cocreate real-world solutions to the complex issue of deintensifying medical services. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR1-10.2196/15618.
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Project description:ObjectiveSafe care of central venous access devices (CVAD) requires clinicians be able to identify key CVAD properties from insertion until safe removal. Our objective was to design and evaluate interfaces to improve CVAD documentation quality and information retrieval.Materials and methodsWe applied user-centered design (UCD) to CVAD property documentation interfaces. We measured expert agreement and front-line clinician accuracy in retrieving key properties in CVADs documented pre- and postimplementation.ResultsThe new approach (1) optimized searches for line types, (2) enabled discrete entry of key properties which propagated to the display name, and (3) facilitated error correction by experts. Expert agreement on key CVAD properties improved from 42% to 83% (P < 0.01). Frontline nurses' perception of key CVAD properties improved from 31% to 86% (P < 0.01). Ease of use scores improved from 15/100 to 80/100 (P < 0.01).ConclusionsUCD significantly improved data quality and nurse perception of CVAD properties to guide subsequent care.
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Project description:: media-1vid110.1542/5852348672001PEDS-VA_2017-3562Video Abstract BACKGROUND AND OBJECTIVES: Multidisciplinary care teams may improve health and control total cost for children with medical complexity (CMC). We aim to quantify the time required to perform nonreimbursed care coordination activities by a multidisciplinary care coordination program for CMC and to estimate the direct salary costs of that time. METHODS:From April 2013 to October 2015, program staff tracked time spent in practicably measured nonbilled care coordination efforts. Staff documented the discipline involved, the method used, and the target of the activity. Cost was estimated by multiplying the time spent by the typical salary of the type of personnel performing the activity. RESULTS:Staff logged 53?148 unique nonbilled care coordination activities for 208 CMC. Dietitians accounted for 26% of total time, physicians and nurse practitioners 24%, registered nurses 29%, and social workers 21% (1.8, 2.3, 1.2, and 1.4 hours per CMC per month per full-time provider, respectively). Median time spent in nonreimbursed care coordination was 2.3 hours per child per month (interquartile range 0.8-6.8). Enrollees required substantially greater time in their first program month than thereafter (median 6.7 vs 2.1 hours per CMC per month). Based on 2015 national salary data, the adjusted median estimated cost of documented activities ranged from $145 to $210 per CMC per month. CONCLUSIONS:In this multidisciplinary model, care coordination for CMC required substantial staff time, even without accounting for all activities, particularly in the first month of program enrollment. Continued advocacy is warranted for the reimbursement of care coordination activities for CMC.
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