Integrating Clinical Decision Support Into Electronic Health Record Systems Using a Novel Platform (EvidencePoint): Developmental Study.

BACKGROUND: Through our work, we have demonstrated how clinical decision support (CDS) tools integrated into the electronic health record (EHR) assist providers in adopting evidence-based practices. This requires confronting technical challenges that result from relying on the EHR as the foundation for tool development; for example, the individual CDS tools need to be built independently for each different EHR. OBJECTIVE: The objective of our research was to build and implement an EHR-agnostic platform for integrating CDS tools, which would remove the technical constraints inherent in relying on the EHR as the foundation and enable a single set of CDS tools that can work with any EHR. METHODS: We developed EvidencePoint, a novel, cloud-based, EHR-agnostic CDS platform, and we will describe the development of EvidencePoint and the deployment of its initial CDS tools, which include EHR-integrated applications for clinical use cases such as prediction of hospitalization survival for patients with COVID-19, venous thromboembolism prophylaxis, and pulmonary embolism diagnosis. RESULTS: The results below highlight the adoption of the CDS tools, the International Medical Prevention Registry on Venous Thromboembolism-D-Dimer, the Wells' criteria, and the Northwell COVID-19 Survival (NOCOS), following development, usability testing, and implementation. The International Medical Prevention Registry on Venous Thromboembolism-D-Dimer CDS was used in 5249 patients at the 2 clinical intervention sites. The intervention group tool adoption was 77.8% (4083/5249 possible uses). For the NOCOS tool, which was designed to assist with triaging patients with COVID-19 for hospital admission in the event of constrained hospital resources, the worst-case resourcing scenario never materialized and triaging was never required. As a result, the NOCOS tool was not frequently used, though the EvidencePoint platform's flexibility and customizability enabled the tool to be developed and deployed rapidly under the emergency conditions of the pandemic. Adoption rates for the Wells' criteria tool will be reported in a future publication. CONCLUSIONS: The EvidencePoint system successfully demonstrated that a flexible, user-friendly platform for hosting CDS tools outside of a specific EHR is feasible. The forthcoming results of our outcomes analyses will demonstrate the adoption rate of EvidencePoint tools as well as the impact of behavioral economics "nudges" on the adoption rate. Due to the EHR-agnostic nature of EvidencePoint, the development process for additional forms of CDS will be simpler than traditional and cumbersome IT integration approaches and will benefit from the capabilities provided by the core system of EvidencePoint.

Provider Response to a Venous Thromboembolism Risk Assessment and Prophylaxis Ordering Tool: Observational Study.

OBJECTIVES: Our health system launched an initiative to regulate venous thromboembolism (VTE) risk assessment and prophylaxis with electronically embedded risk assessment models based on validated clinical prediction rules. Prior to system-wide implementation, usability testing was conducted on the VTE clinical decision support system (CDSS) to assess provider perceptions, facilitate adoption, and usage of the tool. The objective of this study was to conduct usability testing with end users on the CDSS' risk assessment model and prophylaxis ordering components. METHODS: This laboratory usability testing study was conducted with 24 health care providers. Participants were given two case scenarios that mirrored real-world scenarios to assess likelihood of use and adoption. During each case scenario, participants engaged in a think-aloud session, verbalizing their decision-making process while interacting with the tool. Following each case scenario, participants completed the System Usability Scale (SUS) and a posttask interview. Participants' comments and interactions with the VTE CDSS were placed into coding categories and analyzed for generalizable themes by three independent coders. RESULTS: Of the 24 participants, 50% were female and the mean age of all participants was 32.76 years. The average SUS across the different services lines was 72.39 (C grade). Each participant's comments were grouped into three overarching themes: functionality, visibility/navigation, and content. Comments included personalizing workflow for each service line, minimizing the number of clicks, clearly defining risk models, including background on risk scores, and providing treatment guidelines for order sets. CONCLUSION: An important step toward providing quality health care to patients at risk of developing a VTE event is providing user-friendly tools to providers. Following usability testing, our study revealed opportunities to positively impact provider behavior and acceptance. The rigor and breadth of this usability testing study and adoption of the optimizations should increase provider adoption and retention of the VTE CDSS.

Development of a Web-Based Decision Aid and Planning Tool for Family Building After Cancer (Roadmap to Parenthood): Usability Testing.

BACKGROUND: Owing to gonadotoxic cancer treatments, young adult female survivors often report uncertainty about their fertility, reproductive potential, and family-building options after treatment. Roadmap to Parenthood is a web-based decision aid and planning tool for family building after cancer. OBJECTIVE: As part of a patient-centered development process, this study evaluated the usability of the decision aid website to inform design modifications and improve user experience. METHODS: In total, 2 rounds of usability testing were conducted with the target population of young adult female cancer survivors. During the testing sessions, participants viewed the website twice; first, as a think-aloud exercise, and second, while a researcher interrupted at key points to obtain user feedback. Quantitative and qualitative data were collected to assess website usability. Quantitative measures included the System Usability Scale, WebQual, and eHealth Impact Questionnaire. An exit interview with open-ended questions gathered feedback on likes and dislikes and suggestions for improvement. RESULTS: Participants (N=10) were young adult women, with average age of 30.9 (SD 4.51) years, and average time since treatment was 4.44 (SD 3.56) years. Website usability scores improved on the System Usability Scale from "acceptable" in round 1 to "excellent" in round 2 after making design changes based on user feedback (scores of 68 and 89.4, respectively). WebQual scores showed similar improvement from round 1 to round 2 of testing (mean 5.6 to 6.25; range 1-7). On the eHealth Impact Questionnaire, the information and presentation of the website was perceived as comprehensive, easy to understand, and trustworthy. Participants also reported improved confidence to discuss and manage fertility and family-building issues and felt encouraged to play a more active role in managing their fertility. In all, 3 usability themes were identified from the qualitative feedback: ease of use, visibility and navigation, and informational content and usefulness. Overall feedback was positive, and participants reported intentions to use the decision aid website in the future. In total, 10% (1/10) of the participants reported negative emotions when learning about infertility risks and potential family-building challenges. CONCLUSIONS: Website usability improved after design changes were made in response to user feedback. Young adult female survivors reported positive views about the website and indicated that the decision aid would be useful in decision-making about family building after cancer. Future studies will include further design modifications to consider the emotional experiences of users and any additional navigational features or content to optimize the ease of use and support provided by the tool.

Developing a Decision Aid to Facilitate Informed Decision Making About Invasive Mechanical Ventilation and Lung Transplantation Among Adults With Cystic Fibrosis: Usability Testing.

BACKGROUND: Cystic fibrosis (CF) is a life-limiting genetic disease that causes chronic lung infections. We developed an internet-based decision aid (DA) to help patients with CF make better informed decisions regarding treatments and advance care planning. We built the DA around two major treatment decisions: whether to have a lung transplant and whether to agree to invasive mechanical ventilation (intubation). OBJECTIVE: This study aims to conduct usability testing of the InformedChoices CF DA among key stakeholder groups. METHODS: We performed a patient needs assessment using think-aloud usability testing with patients with CF, their surrogates, and CF clinicians. Think-aloud participants provided feedback while navigating the DA, and after viewing, they answered surveys. Transcripts from the think-aloud sessions and survey results were categorized into common, generalizable themes and optimizations for improving content, comprehension, and navigation. We assessed the ease of use of the DA (System Usability Scale) and also assessed the participants' perceptions regarding the overall tone, with an emphasis on emotional reactions to the DA content, level of detail, and usefulness of the information for making decisions about either intubation or lung transplantation, including how well they understood the information and were able to apply it to their own decision-making process. We also assessed the DA's ease of navigation, esthetics, and whether participants were able to complete a series of usability tasks (eg, locating specific information in the DA or using the interactive survival estimates calculator) to ensure that the website was easy to navigate during the clinic-based advance care planning discussions. RESULTS: A total of 12 participants from 3 sites were enrolled from March 9 to August 30, 2018, for the usability testing: 5 CF clinicians (mean age 48.2, SD 12.0 years), 5 adults with CF, and 2 family and surrogate caregivers of people with CF (mean age of CF adults and family and surrogate caregivers 38.8, SD 10.8 years). Among the 12 participants, the average System Usability Scale score for the DA was 88.33 (excellent). Think-aloud analysis identified 3 themes: functionality, visibility and navigation, and content and usefulness. Areas for improvement included reducing repetition, enhancing comprehension, and changing the flow. Several changes to improve the content and usefulness of the DA were recommended, including adding information about alternatives to childbearing, such as adoption and surrogacy. On the basis of survey responses, we found that the navigation of the site was easy for clinicians, patients, and surrogates who participated in usability testing. CONCLUSIONS: Usability testing revealed areas of potential improvement. Testing also yielded positive feedback, suggesting the DA's future success. Integrating changes before implementation should improve the DA's comprehension, navigation, and usefulness and lead to greater adoption.

A Decision Aid Intervention for Family Building After Cancer: Developmental Study on the Initial Steps to Consider When Designing a Web-Based Prototype.

BACKGROUND: An important aspect of patient-centered care involves ensuring that patient-directed resources are usable, understandable, and responsive to patients' needs. A user-centered design refers to an empathy-based framework and an iterative design approach for developing a product or solution that is based on an in-depth understanding of users' needs, values, abilities, and limitations. OBJECTIVE: This study presents the steps taken to develop a prototype for a patient resource for young women who have completed treatment for gonadotoxic cancer to support their decision making about follow-up fertility care and family building. METHODS: User-centered design practices were used to develop Roadmap to Parenthood, a decision aid (DA) website for family building after cancer. A multidisciplinary steering group was assembled and input was provided. Guidelines from the International Patient DA Society and the Ottawa Decision Support Framework were used throughout the development process. In addition, guidelines for developing health DAs with respect to patient diversity and health literacy were also followed. RESULTS: The Roadmap to Parenthood DA website prototype was systematically and iteratively developed. An extensive process of designing and developing solutions from the perspective of the end user was followed. The steps taken included formative work to identify user needs; determining goals, format, and delivery; design processes (eg, personas, storyboards, information architecture, user journey mapping, and wireframing); and content development. Additional design considerations addressed the unique needs of this patient population, including the emotional experiences related to this topic and decision-making context wherein decisions could be considered iteratively while involving a multistep process. CONCLUSIONS: The design strategies presented in this study describe important steps in the early phases of developing a user-centered resource, which will enhance the starting point for usability testing and further design modifications. Future research will pilot test the DA and a planning tool, and evaluate improvement in the decisional conflict regarding family building after cancer. Consistent with a patient-centered approach to health care, the strategies described here may be generalized and applied to the development of other patient resources and clinical contexts to optimize usability, empathy, and user engagement.

Optimizing Telehealth Experience Design Through Usability Testing in Hispanic American and African American Patient Populations: Observational Study.

BACKGROUND: Telehealth-delivered pulmonary rehabilitation (telePR) has been shown to be as effective as standard pulmonary rehabilitation (PR) at improving the quality of life in patients living with chronic obstructive pulmonary disease (COPD). However, it is not known how effective telePR may prove to be among low-income, urban Hispanic American and African American patient populations. To address this question, a collaborative team at Northwell Health developed a telePR intervention and assessed its efficacy among low-income Hispanic American and African American patient populations. The telePR intervention system components included an ergonomic recumbent bike, a tablet with a built-in camera, and wireless monitoring devices. OBJECTIVE: The objective of the study was to assess patient adoption and diminish barriers to use by initiating a user-centered design approach, which included usability testing to refine the telePR intervention prior to enrolling patients with COPD into a larger telePR study. METHODS: Usability testing was conducted in two phases to identify opportunities to streamline and improve the patient experience. The first phase included a prefield usability testing phase to evaluate technical, patient safety, and environmental factors comprising the system architecture. This was followed by an ergonomic evaluation of user interactions with the bicycle, telehealth tablets, and connected wearable devices to ensure optimal placement and practical support for all components of the intervention. The second phase of research included feasibility testing to observe and further optimize the system based on iterative rounds of telePR sessions. RESULTS: During usability and feasibility research, we identified and addressed multiple opportunities for system improvements. These included physical and environmental changes, modifications to accommodate individual patient factors, safety improvements, and technology upgrades. Each enrolled patient was subsequently identified and classified into one of the following 3 categories: (1) independent, (2) intermediate, or (3) dependent. This categorization was used to predict the level of training and support needed for successful participation in the telePR sessions. Feasibility results revealed that patients in the dependent category were unable to perform the rehab sessions without in-person support due to low technical acumen and difficulty with certain features of the system, even after modifications had been made. Intermediate and independent users, however, did exhibit increased independent utilization of telePR due to iterative improvements. CONCLUSIONS: Usability testing helped reduce barriers to use for two subsets of our population, the intermediate and independent users. In addition, it identified a third subset, dependent users, for whom the telePR solution was deemed unsuitable without in-person support. The study established the need for the development of standard operating procedures, and guides were created for both patients and remote respiratory therapists to facilitate the appropriate use of the telePR system intervention. Observational research also led to the development of standard protocols for the first and all subsequent telePR sessions. The primary goals in developing standardization protocols were to establish trust, ensure a positive experience, and encourage future patient engagement with telePR sessions.

Novel findings of left ventricular non-compaction cardiomyopathy, microform cleft lip and poor vision in patient with SMC1A-associated Cornelia de Lange syndrome.

Relatively few patients with Cornelia de Lange syndrome (CdLS) due to SMC1A mutation have been reported, limiting understanding of the full extent of the phenotype. Compared to children with classic NIPBL-associated CdLS, patients with SMC1A-associated CdLS have a milder physical phenotype with prominent intellectual disability, high rate of cleft palate and absence of limb reductions. We present a patient with SMC1A-associated CdLS who had typical features including developmental delay, seizure disorder, feeding difficulties, hirsutism, and cleft palate. She also was found to have three novel features: (i) left ventricular non-compaction (LVNC) cardiomyopathy; (ii) microform cleft lip; and (iii) severe hyperopia and astigmatism. These features have implications regarding potential insight into the pathogenesis of the disorder, screening, and medical management. Hypertrophic cardiomyopathy has previously been reported in SMC1A-associated CdLS, but to our knowledge this is the first reported child with LVNC. Previous reports have included children with isolated clefts of the palate without involvement of the lip. When cleft palate alone is associated with a disorder, the underlying pathophysiology for clefting is sometimes secondary due to mechanical blocking of the fusion of the palatal shelves with the developing tongue. The presence of microform cleft lip in this patient suggests that the pathophysiology of clefting in SMC1A is primary rather than secondary. Few studies report ophthalmologic findings specific to SMC1A. Based on these findings, LVNC cardiomyopathy and cleft lip should be considered features of SMC1A-associated CdLS. All patients should receive echocardiogram and undergo thorough ophthalmologic evaluation as part of routine CdLS care. © 2016 Wiley Periodicals, Inc.

Case-control study of neurodevelopment in deformational plagiocephaly.

OBJECTIVE: We assessed the neurodevelopment of infants with and without deformational plagiocephaly (DP), at an average age of 6 months. METHODS: The Bayley Scales of Infant Development III (BSID-III) were administered to 235 case subjects and 237 demographically similar, control participants. Three-dimensional head photographs were randomized and rated for severity of deformation by 2 craniofacial dysmorphologists who were blinded to case status. RESULTS: We excluded 2 case subjects with no photographic evidence of DP and 70 control subjects who were judged to have some degree of DP. With control for age, gender, and socioeconomic status, case subjects performed worse than control subjects on all BSID-III scales and subscales. Case subjects' average scores on the motor composite scale were approximately 10 points lower than control subjects' average scores (P < .001). Differences for the cognitive and language composite scales were approximately 5 points, on average (P < .001 for both scales). In subscale analyses, case subjects' gross-motor deficits were greater than their fine-motor deficits. Among case subjects, there was no association between BSID-III performance and the presence of torticollis or infant age at diagnosis. CONCLUSIONS: DP seems to be associated with early neurodevelopmental disadvantage, which is most evident in motor functions. After follow-up evaluations of this cohort at 18 and 36 months, we will assess the stability of this finding. These data do not necessarily imply that DP causes neurodevelopmental delay; they indicate only that DP is a marker of elevated risk for delays. Pediatricians should monitor closely the development of infants with this condition.

MDCT diagnosis of the child with posterior plagiocephaly.

OBJECTIVE: In this article, we review the normal anatomy and development of the posterior skull base and describe distinguishing imaging features of the two most common causes of posterior plagiocephaly: posterior deformational plagiocephaly and unilateral lambdoid synostosis. We also describe three unusual cases of posterior plagiocephaly, including asymmetric premature fusion of the anterior and posterior intraoccipital synchondroses, with diagnoses enabled by volume-reformatted MDCT. CONCLUSION: Three-dimensional reformatted MDCT enables accurate diagnosis of common and rare causes of posterior plagiocephaly in children.

Neurodevelopmental implications of "deformational" plagiocephaly.

Over the past decade there has been a dramatic increase in referrals to specialty clinics, craniofacial centers, plastic surgeons, and neurosurgeons for assessment and treatment of deformational plagiocephaly (DP). Though considered a medically benign condition, preliminary reports suggest that DP may be associated with developmental problems. However, mechanisms to account for this association have not been hypothesized or empirically tested. Although treatment justifications often center on prevention of atypical appearance, little is known about the cosmetic outcomes of treated and untreated children. In this review we hypothesize different etiological pathways linking DP with neurodevelopment (e.g., environmental positioning limitations with and without underlying CNS pathology). We outline directions for research on incidence and prevalence, developmental outcomes, sex differences, determinants of treatment participation, and craniofacial appearance. Despite the paucity of existing research, preliminary findings suggest that children with this condition should be screened and monitored for developmental delays or deficits, as we await more conclusive information from future studies.