Genomic Health Literacy Interventions in Pediatrics:Scoping Review

BACKGROUND: The emergence of genetic and genomic sequencing approaches for pediatric patients has raised questions about the genomic health literacy levels, attitudes toward receiving genomic information, and use of this information to inform treatment decisions by pediatric patients and their parents. However, the methods to educate pediatric patients and their parents about genomic concepts through digital health interventions have not been well-established. OBJECTIVE: The primary objective of this scoping review is to investigate the current levels of genomic health literacy and the attitudes toward receiving genomic information among pediatric patients and their parents. The secondary aim is to investigate patient education interventions that aim to measure and increase genomic health literacy among pediatric patients and their parents. The findings from this review will be used to inform future digital health interventions for patient education. METHODS: A scoping review using PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines and protocols was completed using the following databases: MEDLINE, Embase, CINAHL, and Scopus. Our search strategy included genomic information inclusive of all genetic and genomic terms, pediatrics, and patient education. Inclusion criteria included the following: the study included genetic, genomic, or a combination of genetic and genomic information; the study population was pediatric (children and adolescents <18 years) and parents of patients with pediatric illnesses or only parents of patients with pediatric illnesses; the study included an assessment of the knowledge, attitudes, and intervention regarding genomic information; the study was conducted in the last 12 years between 2008 and 2020; and the study was in the English language. Descriptive data regarding study design, methodology, disease population, and key findings were extracted. All the findings were collated, categorized, and reported thematically. RESULTS: Of the 4618 studies, 14 studies (n=6, 43% qualitative, n=6, 43% mixed methods, and n=2, 14% quantitative) were included. Key findings were based on the following 6 themes: knowledge of genomic concepts, use of the internet and social media for genomic information, use of genomic information for decision-making, hopes and attitudes toward receiving genomic information, experiences with genetic counseling, and interventions to improve genomic knowledge. CONCLUSIONS: This review identified that older age is related to the capacity of understanding genomic concepts, increased genomic health literacy levels, and the perceived ability to participate in decision-making related to genomic information. In addition, internet-searching plays a major role in obtaining genomic information and filling gaps in communication with health care providers. However, little is known about the capacity of pediatric patients and their parents to understand genomic information and make informed decisions based on the genomic information obtained. More research is required to inform digital health interventions and to leverage the leading best practices to educate these genomic concepts

The usability of ventilators: a comparative evaluation of use safety and user experience

Setup of the testing facilities at the Clinical Skills and Patient Simulation Center at the University of North Carolina School of Medicine, where the simulator room and observation room can be seen. (TIF 9461 kb

The Complexity of Transferring Remote Monitoring and Virtual Care Technology Between Countries: Lessons From an International Workshop

International deployment of remote monitoring and virtual care (RMVC) technologies would efficiently harness their positive impact on outcomes. Since Canada and the United Kingdom have similar populations, health care systems, and digital health landscapes, transferring digital health innovations between them should be relatively straightforward. Yet examples of successful attempts are scarce. In a workshop, we identified 6 differences that may complicate RMVC transfer between Canada and the United Kingdom and provided recommendations for addressing them. These key differences include (1) minority groups, (2) physical geography, (3) clinical pathways, (4) value propositions, (5) governmental priorities and support for digital innovation, and (6) regulatory pathways. We detail 4 broad recommendations to plan for sustainability, including the need to formally consider how highlighted country-specific recommendations may impact RMVC and contingency planning to overcome challenges; the need to map which pathways are available as an innovator to support cross-country transfer; the need to report on and apply learnings from regulatory barriers and facilitators so that everyone may benefit; and the need to explore existing guidance to successfully transfer digital health solutions while developing further guidance (eg, extending the nonadoption, abandonment, scale-up, spread, sustainability framework for cross-country transfer). Finally, we present an ecosystem readiness checklist. Considering these recommendations will contribute to successful international deployment and an increased positive impact of RMVC technologies. Future directions should consider characterizing additional complexities associated with global transfer

The iCanCope pain self-management application for adolescents with juvenile idiopathic arthritis: A pilot randomized controlled trial

Objectives: To evaluate the feasibility and preliminary effectiveness of iCanCope with Pain (iCanCope), a smartphone-based pain self-management program, in adolescents with JIA. iCanCope featured symptom tracking, goal-setting, pain coping skills and social support. Methods: A two-arm pilot randomized controlled trial was used to evaluate the iCanCope app compared with a version with symptom tracking only. Primary (feasibility) outcomes were: participant accrual/attrition rates, success of app deployment, acceptability and adherence. Secondary (preliminary effectiveness) outcomes were: pain intensity, pain-related activity limitations and health-related quality of life. Outcomes were assessed at baseline and 8 weeks. Adherence was defined as the proportion of completed symptom reports: \u27low\u27 (≤24%); \u27low-moderate\u27 (25-49%); \u27high-moderate\u27 (50-75%); or \u27high\u27 (76-100%). Linear mixed models were applied for preliminary effectiveness analyses as per intention-to-treat. Results: Adolescents (N = 60) were recruited from three paediatric rheumatology centres. Rates of accrual and attrition were 82 and 13%, respectively. Both apps were deployed with high success (over 85%) and were rated as highly acceptable. Adherence was similar for both groups, with most participants demonstrating moderate-to-high adherence. Both groups exhibited a clinically meaningful reduction in pain intensity (≥1 point) that did not statistically differ between groups. There were no significant changes in activity limitations or health-related quality of life. Conclusion: The iCanCope pilot randomized controlled trial was feasible to implement in a paediatric rheumatology setting. Both apps were deployed successfully, with high acceptability, and were associated with moderate-to-high adherence. Preliminary reductions in pain intensity warrant a future trial to evaluate effectiveness of iCanCope in improving health outcomes in adolescents with JIA

Defending Against Medical Error: Personal Reflections on the Legacy of John Senders.

OBJECTIVE: To honor the legacy of John Senders, a distinguished member of the Human Factors and Ergonomics Society, by a short, personal history of him, but then to honor his legacy by extending it through our own professional opinions, with an emphasis on the study of human error and its implications for healthcare systems-two topics in which he excelled. BACKGROUND: The authors are familiar with the topic and subject matter. One was a friend of Senders for over 50 years. Another was a collaborator and joint author with Senders (as well as his stepdaughter). All three authors have extensive publications in the topic areas. METHOD, RESULTS, AND CONCLUSION: The authors used personal accounts of interactions with Senders at conferences, experiences living and working with him, and a brief review of his most personal, notable publications in healthcare. The reflections indicate a strong resonance on Senders contributions to system design that are relevant today in healthcares most challenging period in its history

Design of a Patient Voice App Experience for Heart Failure Management: Usability Study

BackgroundThe use of digital therapeutics (DTx) in the prevention and management of medical conditions has increased through the years, with an estimated 44 million people using one as part of their treatment plan in 2021, nearly double the number from the previous year. DTx are commonly accessed through smartphone apps, but offering these treatments through additional platforms can improve the accessibility of these interventions. Voice apps are an emerging technology in the digital health field; not only do they have the potential to improve DTx adherence, but they can also create a better user experience for some user groups. ObjectiveThis research aimed to identify the acceptability and feasibility of offering a voice app for a chronic disease self-management program. The objective of this project was to design, develop, and evaluate a voice app of an already-existing smartphone-based heart failure self-management program, Medly, to be used as a case study. MethodsA voice app version of Medly was designed and developed through a user-centered design process. We conducted a usability study and semistructured interviews with patients with heart failure (N=8) at the Peter Munk Cardiac Clinic in Toronto General Hospital to better understand the user experience. A Medly voice app prototype was built using a software development kit in tandem with a cloud computing platform and was verified and validated before the usability study. Data collection and analysis were guided by a mixed methods triangulation convergence design. ResultsCommon themes were identified in the results of the usability study, which involved 8 participants with heart failure. Almost all participants (7/8, 88%) were satisfied with the voice app and felt confident using it, although half of the participants (4/8, 50%) were unsure about using it in the future. Six main themes were identified: changes in physical behavior, preference between voice app and smartphone, importance of music during voice app interaction, lack of privacy concerns, desired reassurances during voice app interaction, and helpful aids during voice app interaction. These findings were triangulated with the quantitative data, and it concluded that the main area for improvement was related to the ease of use; design changes were then implemented to better improve the user experience. ConclusionsThis work offered preliminary insight into the acceptability and feasibility of a Medly voice app. Given the recent emergence of voice apps in health care, we believe that this research offered invaluable insight into successfully deploying DTx for chronic disease self-management using this technology

A Voice App Design for Heart Failure Self-management: Proof-of-Concept Implementation Study

BackgroundVoice user interfaces are becoming more prevalent in health care and are commonly being used for patient engagement. There is a growing interest in identifying the potential this form of interface has on patient engagement with digital therapeutics (DTx) in chronic disease management. Making DTx accessible through an alternative interaction model also has the potential to better meet the needs of some patients, such as older adults and those with physical and cognitive impairments, based on existing research. ObjectiveThis study aimed to evaluate how participants with heart failure interacted with a voice app version of a DTx, Medly, through a proof-of-concept implementation study design. The objective was to understand whether the voice app would enable the participants to successfully interact with the DTx, with a focus on acceptability and feasibility. MethodsA mixed methods concurrent triangulation design was used to better understand the acceptability and feasibility of the use of the Medly voice app with the study participants (N=20) over a 4-week period. Quantitative data included engagement levels, accuracy rates, and questionnaires, which were analyzed using descriptive statistics. Qualitative data included semistructured interviews and were analyzed using a qualitative descriptive approach. ResultsThe overall average engagement level was 73% (SD 9.5%), with a 14% decline between results of weeks 1 and 4. The biggest difference was between the average engagement levels of the oldest and youngest demographics, 84% and 43%, respectively, but these results were not significant—Kruskal-Wallis test, H(2)=3.8 (P=.14). The Medly voice app had an overall accuracy rate of 97.8% and was successful in sending data to the clinic. From an acceptability perspective, the voice app was ranked in the 80th percentile, and overall, the users felt that the voice app was not a lot of work (average of 2.1 on a 7-point Likert scale). However, the overall average score for whether users would use it in the future declined by 13%. Thematic analysis revealed the following: the theme feasibility of clinical integration had 2 subthemes, namely users adapted to the voice app’s conversational style and device unreliability, and the theme voice app acceptability had 3 subthemes, namely the device integrated well within household and users’ lives, users blamed themselves when problems arose with the voice app, and voice app was missing specific, desirable user features. ConclusionsIn conclusion, participants were largely successful in using the Medly voice app despite some of the barriers faced, proving that an app such as this could be feasible to be deployed in the clinic. Our data begin to piece together the patient profile this technology may be most suitable for, namely those who are older, have flexible schedules, are confident in using technology, and are experiencing other medical conditions