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Qualitative user evaluation of a revised pharmacogenetic educational toolkit.

ABSTRACT: Introduction:Pharmacogenetic (PGx) testing is a leading application for personalized and precision medicine; however, there are barriers, including limited provider and patient understanding, which affect its uptake. There is a need for tools that can enhance the patient and provider experience with testing and promoting the shared and informed decision-making. Materials and methods:In this study, we sought to gather additional feedback on a PGx toolkit comprised of four educational tools that had been previously evaluated through an online survey by pharmacists. Specifically, we conducted semi-structured interviews with pharmacists and members of the public regarding their understanding and utility of the toolkit and its individual components. Results:Participants found three of the four toolkit components, a test information sheet, flipbook, and results sheet, to be useful and important. The fourth component, results card, was viewed less favorably. Participants differed in their preference for medical jargon and detailed results nomenclature (namely star * alleles). Conclusion:User input during the development of educational materials is essential for optimizing utilization, effectiveness, and comprehension.

SUBMITTER: Mills R

PROVIDER: S-EPMC6128278 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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Qualitative user evaluation of a revised pharmacogenetic educational toolkit.

Mills Rachel R Haga Susanne B SB

Pharmacogenomics and personalized medicine 20180904

<h4>Introduction</h4>Pharmacogenetic (PGx) testing is a leading application for personalized and precision medicine; however, there are barriers, including limited provider and patient understanding, which affect its uptake. There is a need for tools that can enhance the patient and provider experience with testing and promoting the shared and informed decision-making.<h4>Materials and methods</h4>In this study, we sought to gather additional feedback on a PGx toolkit comprised of four education ...[more]

PMID: 30214267

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Project description:BackgroundThis program evaluation considers the need for increased professional and patient education for adolescent and young adult (AYA) cancer survivorship. Due to the high incidence of late effects of cancer treatment among AYA cancer survivors, knowledge sharing and communications are needed throughout the transition from cancer care into community care. AYA survivors are likely to need developmentally appropriate psychosocial care as well as extensive follow-on surveillance by physicians who are educated and aware of the likely chronic conditions and late effects that may occur in these patients.ObjectiveThe objective of this study was to evaluate the outcomes of the After Cancer Care Ends, Survivorship Starts for Adolescent and Young Adults (ACCESS AYA) programming. The intent of the ACCESS AYA program was to build health literacy around AYA survivorship issues and to stimulate improved communications between survivors and health care providers. This paper addresses the central research question of "How did the ACCESS AYA program increase health literacy, communications, and understanding among AYA survivors and providers?"MethodsThe primarily qualitative evaluation included a brief introductory survey of participant awareness and effectiveness of the ACCESS AYA project serving as a recruitment tool. Survey respondents were invited to participate in in-depth interviews based on interview guides tailored to the different stakeholder groups. The evaluation used the Atlas Ti qualitative database and software for coding and key word analyses. Interrater reliability analyses were assessed using Cohen kappa analysis with Stata 12.1 (StataCorp LLC) software.ResultsThe key themes, which included survivor wellbeing, health care professional education, cancer advocates role and education, hospital and community-based resources, and the role of societal support, are presented in a concept map. The interrater reliability scores (ranging from 1 to minus 1) were .893 for first cycle coding and .784 for the second cycle. In the brief quantitative survey based on a scale of 1 to 5 with 5 as high, the 22 respondents rated their level of awareness of the project with a mean 3.2 (CI 3.02-3.45) and project effectiveness with a mean of 4 (CI 3.72-4.27).ConclusionsThis study contributes to understanding of the ACCESS AYA survivor community in central Texas and the health care professionals and advocates who aid them in their efforts to a new normal life and wellbeing in their survivorship. The results of the evaluation highlight the need to continue to build both survivor and professional resources to address the unique impact of cancer on AYA cancer survivors.

Project description:BACKGROUND:Transitioning into parenthood can be stressful as parents struggle to cope with new parenting responsibilities. Although perinatal care in hospitals aims to improve parental outcomes, there is a general consensus that it is suboptimal and insufficient. Therefore, many studies have designed intervention methods to supplement support for parents during this stressful period. However, studies often focus on parental outcomes as indicators of their interventions' success and effectiveness. Studies evaluating participants' experiences and feedback are limited. OBJECTIVE:This study aimed to examine the experiences and perceptions of participants who participated in a supportive education parenting program intervention study. METHODS:A qualitative semistructured interview was conducted with 16 mothers (6 control and 10 intervention) from a randomized controlled trial. The supportive education parenting program received by the intervention group included 2 phone-based perinatal educational sessions, a phone-based educational session after childbirth, and a 1-month postpartum access to a mobile health app. The interviews were approximately 30- to 60-min long, audiotaped and transcribed verbatim, and analyzed using thematic analysis. Study findings were reported according to the Consolidated Criteria for Reporting Qualitative Research checklist. RESULTS:The 3 main themes evaluating mothers' experiences and perceptions were generated: (1) changed perspective toward parenthood, (2) journey from pregnancy to after birth, and (3) a way forward. Mothers from the intervention group mostly had good perinatal experiences with sufficient support received, which elevated their emotional well-being and increased parenting involvement. Mothers in the control group, although satisfied with the hospital care received, were more stressed and shared a need for professional advice and extra support. Apart from technical enhancements, mothers also requested extended social support during early pregnancy up to 1 year postpartum, taking into consideration Asian cultural practices. CONCLUSIONS:Mothers who received the intervention were overall satisfied with the support provided by the technology-based supportive educational parenting program. The success of the educational program in this study highlights the need to supplement standard care in hospitals with technology-based educational programs. Future research should include fathers' perceptions to attain an in-depth understanding of overall participants' experiences and needs in the future development of supportive and educational programs.

Project description:ObjectiveAuthors evaluated whether displaying context sensitive links to infrequently accessed educational materials and patient information via the user interface of an inpatient computerized care provider order entry (CPOE) system would affect access rates to the materials.DesignThe CPOE of Vanderbilt University Hospital (VUH) included "baseline" clinical decision support advice for safety and quality. Authors augmented this with seven new primarily educational decision support features. A prospective, randomized, controlled trial compared clinicians' utilization rates for the new materials via two interfaces. Control subjects could access study-related decision support from a menu in the standard CPOE interface. Intervention subjects received active notification when study-related decision support was available through context sensitive, visibly highlighted, selectable hyperlinks.MeasurementsRates of opportunities to access and utilization of study-related decision support materials from April 1999 through March 2000 on seven VUH Internal Medicine wards.ResultsDuring 4,466 intervention subject-days, there were 240,504 (53.9/subject-day) opportunities for study-related decision support, while during 3,397 control subject-days, there were 178,235 (52.5/subject-day) opportunities for such decision support, respectively (p = 0.11). Individual intervention subjects accessed the decision support features at least once on 3.8% of subject-days logged on (278 responses); controls accessed it at least once on 0.6% of subject-days (18 responses), with a response rate ratio adjusted for decision support frequency of 9.17 (95% confidence interval 4.6-18, p < 0.0005). On average, intervention subjects accessed study-related decision support materials once every 16 days individually and once every 1.26 days in aggregate.ConclusionHighlighting availability of context-sensitive educational materials and patient information through visible hyperlinks significantly increased utilization rates for study-related decision support when compared to "standard" VUH CPOE methods, although absolute response rates were low.

Dataset Information

Qualitative user evaluation of a revised pharmacogenetic educational toolkit.

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Qualitative user evaluation of a revised pharmacogenetic educational toolkit.

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