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Participant use and communication of findings from exome sequencing: a mixed-methods study.

ABSTRACT: PURPOSE:This study investigated how genome sequencing results affect health behaviors, affect, and communication. METHODS:We report on 29 participants who received a sequence result in the ClinSeq study, a cohort of well-educated, postreproductive volunteers. A mixed-methods design was used to explore respondents' use, communication, and perceived utility of results. RESULTS:Most participants (72%) shared their result with at least one health-care provider, and 31% reported subsequent changes in the health care they received. Participants scored high on the Positive Experiences subscale and low on the Distress subscale of a modified version of the Multidimensional Impact of Cancer Risk Assessment. The majority (93%) shared their result with at least one family member. Participants described deriving personal utility from their results. CONCLUSION:This article is the first to describe research participants' reactions to actionable sequencing results. Our findings suggest clinical and personal benefit from receiving sequencing results, both of which may contribute to improved health for the recipients. Given the participants' largely positive or neutral affective responses and disclosure of their results to physicians and relatives, health-care providers should redirect concern from the potential for distress and attend to motivating patients to follow their medical recommendations.Genet Med 18 6, 577-583.

SUBMITTER: Lewis KL

PROVIDER: S-EPMC4860179 | biostudies-literature | 2016 Jun

REPOSITORIES: biostudies-literature

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Participant use and communication of findings from exome sequencing: a mixed-methods study.

Lewis Katie L KL Hooker Gillian W GW Connors Philip D PD Hyams Travis C TC Wright Martha F MF Caldwell Samantha S Biesecker Leslie G LG Biesecker Barbara B BB

Genetics in medicine : official journal of the American College of Medical Genetics 20151105 6

<h4>Purpose</h4>This study investigated how genome sequencing results affect health behaviors, affect, and communication.<h4>Methods</h4>We report on 29 participants who received a sequence result in the ClinSeq study, a cohort of well-educated, postreproductive volunteers. A mixed-methods design was used to explore respondents' use, communication, and perceived utility of results.<h4>Results</h4>Most participants (72%) shared their result with at least one health-care provider, and 31% reported ...[more]

PMID: 26540156

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Project description:ObjectivePhysician burnout associated with EHRs is a major concern in health care. A comprehensive assessment of differences among physicians in the areas of EHR performance, efficiency, and satisfaction has not been conducted. The study sought to study relationships among physicians' performance, efficiency, perceived workload, satisfaction, and usability in using the electronic health record (EHR) with comparisons by age, gender, professional role, and years of experience with the EHR.Materials and methodsMixed-methods assessments of the medical intensivists' EHR use and perceptions. Using simulated cases, we employed standardized scales, performance measures, and extensive interviews. NASA Task Load Index (TLX), System Usability Scale (SUS), and Questionnaire on User Interface Satisfaction surveys were deployed.ResultsThe study enrolled 25 intensive care unit (ICU) physicians (11 residents, 9 fellows, 5 attendings); 12 (48%) were men, with a mean age of 33 (range, 28-55) years and a mean of 4 (interquartile range, 2.0-5.5) years of Epic experience. Overall task performance scores were similar for men (90% ± 9.3%) and women (92% ± 4.4%), with no statistically significant differences (P = .374). However, female physicians demonstrated higher efficiency in completion time (difference = 7.1 minutes; P = .207) and mouse clicks (difference = 54; P = .13). Overall, men reported significantly higher perceived EHR workload stress compared with women (difference = 17.5; P < .001). Men reported significantly higher levels of frustration with the EHR compared with women (difference = 33.15; P < .001). Women reported significantly higher satisfaction with the ease of use of the EHR interface than men (difference = 0.66; P =.03). The women's perceived overall usability of the EHR is marginally higher than that of the men (difference = 10.31; P =.06).ConclusionsAmong ICU physicians, we measured significant gender-based differences in perceived EHR workload stress, satisfaction, and usability-corresponding to objective patterns in EHR efficiency. Understanding the reasons for these differences may help reduce burnout and guide improvements to physician performance, efficiency, and satisfaction with EHR use.DesignMixed-methods assessments of the medical intensivists' EHR use and perceptions. Using simulated cases, we employed standardized scales, performance measures, and extensive interviews.

Project description:BACKGROUND:Identifying effective means of communication between patients and their health care providers has a positive impact on patients' satisfaction, adherence, and health-related outcomes. OBJECTIVE:This study aimed to identify the impact of patients' age on their communication and technology preferences when managing their health. We hypothesize that a patient's age affects their communication and technology preferences when interacting with clinicians and managing their health. METHODS:A mixed methods study was conducted to identify the preferences of patients with cardiovascular diseases. Results were analyzed based on the patients' age. Grounded theory was used to analyze the qualitative data. Patients were recruited based on age, gender, ethnicity, and zip code. RESULTS:A total of 104 patients were recruited: 34 young adults (19-39 years), 33 middle aged (40-64), and 37 senior citizens (>65). Young adults (mean 8.29, SD 1.66) reported higher computer self-efficacy than middle-aged participants (mean 5.56, SD 3.43; P<.05) and senior citizens (mean 47.55, SD 31.23; P<.05). Qualitative analysis identified the following three themes: (1) patient engagement (young adults favored mobile technologies and text messaging, middle-aged patients preferred phone calls, and senior citizens preferred direct interactions with the health care provider); (2) patient safety (young adults preferred electronic after-visit summaries [AVS] and medication reconciliation over the internet; middle-aged patients preferred paper-based or emailed AVS and medication reconciliation in person; senior citizens preferred paper-based summaries and in-person medication reconciliation); (3) technology (young adults preferred smartphones and middle-aged patients and senior citizens preferred tablets or PCs). Middle-aged patients were more concerned about computer security than any other group. A unique finding among senior citizens was the desire for caregivers to have access to their personal health record (PHR). CONCLUSIONS:Patients of different ages have different communication and technology preferences and different preferences with respect to how they would like information presented to them and how they wish to interact with their provider. The PHR is one approach to improving patient engagement, but nontechnological options need to be sustained to support all patients.

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Project description:INTRODUCTION:Technology has been placed at the centre of global health policy and has been cited as having the potential to increase efficiency and remove geographical boundaries for patients to access care. Communication technology may support patients with orthopaedic problems, which is one of the leading causes of disability worldwide. There are several examples of technology being used in clinical research, although uptake in practice remains low. An understanding of patient preferences will support the design of a communication technology supported treatment pathway for patients undergoing orthopaedic rehabilitation. METHODS AND ANALYSIS:This mixed methods project will be conducted in four phases. In phase I, a systematic review of qualitative studies reporting communication technology use for orthopaedic rehabilitation will be conducted to devise a taxonomy of tasks patients' face when using these technologies to access their care. In phase II, qualitative interviews will investigate how the work of being a patient changes during face-to-face and communication technology consultations and how these changes influence preference. In phase III, a discrete choice experiment will investigate the factors that influence preferences for the use of communication technology for orthopaedic rehabilitation consultations. Phase IV will be a practical application of these results. We will design a 'minimally disruptive' communication technology supported pathway for patients undergoing orthopaedic rehabilitation. ETHICS AND DISSEMINATION:The design of a pathway and underpinning patient preference will assist in understanding factors that might influence technology implementation for clinical care. This study requires ethical approval for phases II, III and IV. Approvals have been received for phase II (approval received on 4 December 2016 from the South Central-Oxford C Research Ethics Committee (IRAS ID: 255172, REC Reference 18/SC/0663)) and phase III (approval received on 18 October 2019 from the London-Hampstead Research Ethics Committee (IRAS ID: 248064, REC Reference 19/LO/1586)) and will be sought for phase IV. All participants will provide informed written consent prior to being enrolled onto the study. PROSPERO REGISTRATION NUMBER:CRD42018100896.

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Participant use and communication of findings from exome sequencing: a mixed-methods study.

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Participant use and communication of findings from exome sequencing: a mixed-methods study.

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