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: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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| S-EPMC7293064 | biostudies-literature
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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Project description:BACKGROUND:Without effective self-care, people with diabetic foot ulcers (DFUs) are at risk of prolonged healing times, hospitalization, amputation, and reduced quality of life. Despite these consequences, adherence to DFU self-care remains low. New strategies are needed to engage people in the self-care of their DFUs. OBJECTIVE:This study aimed to evaluate the usability and potential usefulness of a new mobile phone app to engage people with DFUs in self-care. METHODS:We developed a new mobile phone app, MyFootCare, to engage people with DFUs through goals, progress monitoring, and reminders in self-care. Key features included novel visual analytics that automatically extract and monitor DFU size information from mobile phone photos of the foot. A functional prototype of MyFootCare was created and evaluated through a user-centered design process with 11 participants with DFUs. Data were collected through semistructured interviews discussing existing self-care practices and observations of MyFootCare with participants. Data were analyzed qualitatively through thematic analysis. RESULTS:Key themes were as follows: (1) participants already used mobile phone photos to monitor their DFU progress; (2) participants had limited experience with using mobile phone apps; (3) participants desired the objective DFU size data provided by the tracking feature of MyFootCare to monitor their DFU progress; (4) participants were ambivalent about the MyFootCare goal image and diary features, commenting that these features were useful but also that it was unlikely that they would use them; and (5) participants desired to share their MyFootCare data with their clinicians to demonstrate engagement in self-care and to reflect on their progress. CONCLUSIONS:MyFootCare shows promising features to engage people in DFU self-care. Most notably, ulcer size data are useful to monitor progress and engage people. However, more work is needed to improve the usability and accuracy of MyFootCare, that is, by refining the process of taking and analyzing photos of DFUs and removing unnecessary features. These findings open the door for further work to develop a system that is easy to use and functions in everyday life conditions and to test it with people with DFUs and their carers.
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Project description:OBJECTIVES:To validate new caregiver-reported quality measures assessing care coordination services for children with medical complexity (CMC). METHODS:A cross-sectional analysis of the associations between 20 newly developed Family Experiences with Coordination of Care (FECC) quality measures and 3 validation measures among 1209 caregivers who responded to a telephone or mailed survey from August to November 2013 in Minnesota and Washington. Validation measures included an access composite, a provider rating item, and a care coordination outcome measure, all derived from Consumer Assessments of Healthcare Providers and Systems (CAHPS) survey items. Multivariate regression was used to examine associations between the 3 validation measures and each of the 20 FECC quality measures. RESULTS:Nineteen of the 20 FECC quality measures were significantly and positively associated with ?1 of the validation measures. The components of care coordination demonstrating the strongest positive association with provider ratings included: 1) having a care coordinator who was knowledgeable and supportive and advocated for the child's needs (??=?26.4; 95% confidence interval [CI], 20.0-32.8, scaled to reflect change associated with a 0-100 change in the FECC measure score); and 2) receiving a written visit summary that was useful and easy to understand (??=?22.0; 95% CI, 17.1-27.0). CONCLUSIONS:Nineteen newly developed FECC quality measures demonstrated convergent validity with previously validated CAHPS measures. These new measures are valid for assessing the quality of care coordination services provided to CMC and may be useful for evaluating new models of care focused on improving these services.
| S-EPMC6152933 | biostudies-literature
Project description:Background and objectiveHealth care use of children with medical complexity (CMC), such as those with neurologic impairment or other complex chronic conditions (CCCs) and those with technology assistance (TA), is not well understood. The objective of the study was to evaluate health care utilization and costs in a population-based sample of CMC in Ontario, Canada.MethodsHospital discharge data from 2005 through 2007 identified CMC. Complete health system use and costs were analyzed over the subsequent 2-year period.ResultsThe study identified 15 771 hospitalized CMC (0.67% of children in Ontario); 10 340 (65.6%) had single-organ CCC, 1063 (6.7%) multiorgan CCC, 4368 (27.6%) neurologic impairment, and 1863 (11.8%) had TA. CMC saw a median of 13 outpatient physicians and 6 distinct subspecialists. Thirty-six percent received home care services. Thirty-day readmission varied from 12.6% (single CCC without TA) to 23.7% (multiple CCC with TA). CMC accounted for almost one-third of child health spending. Rehospitalization accounted for the largest proportion of subsequent costs (27.2%), followed by home care (11.3%) and physician services (6.0%). Home care costs were a much larger proportion of costs in children with TA. Children with multiple CCC with TA had costs 3.5 times higher than children with a single CCC without TA.ConclusionsAlthough a small proportion of the population, CMC account for a substantial proportion of health care costs. CMC make multiple transitions across providers and care settings and CMC with TA have higher costs and home care use. Initiatives to improve their health outcomes and decrease costs need to focus on the entire continuum of care.
| S-EPMC4528341 | biostudies-literature
Project description:BackgroundMental health care (MHC) needs to shift towards person-centered care to better meet people's individual needs. Open Dialogue (OD) is well-aligned with this perspective and brings it into practice. This study focuses on exploring the change process within a pilot project involving three MHC teams as they transition to a person-centered OD practice. Our aim is to identify and reflect on the challenges faced by MHC professionals in adopting person-centered care, and shedding light on the underlying complexity of these challenges. By gaining a better understanding of these obstacles, we hope to contribute to the adoption of the person-centered approach in MHC practice.MethodsOur research employed a qualitative design, involving a total of 14 semi-structured interviews with MHC professionals who were either trained in OD, OD trainees, or MHC professionals without OD training. To analyze the data, we utilized a hybrid approach that combined deductive - and inductive thematic analysis.ResultsWe identified four distinctive challenges: (1) understanding and knowledge transfer, (2) (inter)personal process, (3) emotional discomfort, and (4) the need for multi-stakeholder participation and support. In practice, these challenges intersect and the appearance of and relationships between these challenges are not linear or disentangleable.ConclusionUpon careful consideration of these interdependent challenges, it became evident that embedding a person-centered approach like OD brings about systemic change, leading to an unfamiliar situation X. The research findings indicated that understanding and conveying the concept of person-centered care in practical settings poses significant challenges. The field of knowledge management helps to capture the complexity of understanding and transferring this knowledge. The change process necessitates an (inter)personal process and elicits emotional discomfort, as person-centered OD practice confronts a deeply entrenched paradigm in MHC. Achieving a shared understanding of person-centered care requires dedicated time and attention, while introducing this approach prompts broader discussions on underlying values and human rights in MHC. Current implementation efforts may underestimate or overlook these underlying values, but initiating an open dialogue can serve as an initial step in addressing the complexities.
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