Abstract:
BACKGROUND:Hydroxyurea, chronic blood transfusions, and bone marrow transplantation are efficacious, disease-modifying therapies for sickle cell disease but involve complex risk-benefit trade-offs and decisional dilemma compounded by the lack of comparative studies. A patient decision aid can inform patients about their treatment options, the associated risks and benefits, help them clarify their values, and allow them to participate in medical decision making. OBJECTIVE:The objective of this study was to develop a literacy-sensitive Web-based patient decision aid based on the Ottawa decision support framework, and through a randomized clinical trial estimate the effectiveness of the patient decision aid in improving patient knowledge and their involvement in decision making. METHODS:We conducted population decisional needs assessments in a nationwide sample of patients, caregivers, community advocates, policy makers, and health care providers using qualitative interviews to identify decisional conflict, knowledge and expectations, values, support and resources, decision types, timing, stages and learning, and personal clinical characteristics. Interview transcripts were coded using QSR NVivo 10. Alpha testing of the patient decision aid prototype was done to establish usability and the accuracy of the information it conveyed, and then was followed by iterative cycles of beta testing. We conducted a randomized clinical trial of adults and of caregivers of pediatric patients to evaluate the efficacy of the patient decision aid. RESULTS:In a decisional needs assessment, 223 stakeholders described their preferences, helping to guide the development of the patient decision aid, which then underwent alpha testing by 30 patients and 38 health care providers and iterative cycles of beta testing by 87 stakeholders. In a randomized clinical trial, 120 participants were assigned to either the patient decision aid or standard care (SC) arm. Qualitative interviews revealed high levels of usability, acceptability, and utility of the patient decision aid in education, values clarification, and preparation for decision making. On the acceptability survey, 72% (86/120) of participants rated the patient decision aid as good or excellent. Participants on the patient decision aid arm compared to the SC arm demonstrated a statistically significant improvement in decisional self-efficacy (P=.05) and a reduction in the informed sub-score of decisional conflict (P=.003) at 3 months, with an improvement in preparation for decision making (P<.001) at 6 months. However, there was no improvement in terms of the change in knowledge, the total or other domain scores of decisional conflicts, or decisional self-efficacies at 6 months. The large amount of missing data from survey completion limited our ability to draw conclusions about the effectiveness of the patient decision aid. The patient decision aid met 61 of 62 benchmarks of the international patient decision aid collaboration standards for content, development process, and efficacy. CONCLUSIONS:We have developed a patient decision aid for sickle cell disease with extensive input from stakeholders and in a randomized clinical trial demonstrated its acceptability and utility in education and decision making. We were unable to demonstrate its effectiveness in improving patient knowledge and involvement in decision making. TRIAL REGISTRATION:ClinicalTrials.gov NCT03224429; https://clinicaltrials.gov/ct2/show/NCT03224429 and ClinicalTrials.gov NCT02326597; https://clinicaltrials.gov/ct2/show/NCT02326597.
journal_name
J Med Internet Resjournal_title
Journal of medical Internet researchauthors
Krishnamurti L,Ross D,Sinha C,Leong T,Bakshi N,Mittal N,Veludhandi D,Pham AP,Taneja A,Gupta K,Nwanze J,Matthews AM,Joshi S,Vazquez Olivieri V,Arjunan S,Okonkwo I,Lukombo I,Lane P,Bakshi N,Loewenstein Gdoi
10.2196/14462subject
Has Abstractpub_date
2019-12-04 00:00:00pages
e14462issue
12eissn
1439-4456issn
1438-8871pii
v21i12e14462journal_volume
21pub_type
杂志文章,随机对照试验abstract:BACKGROUND:Field-testing is a quality assurance criterion in the development of patient decision-support technologies (PDSTs), as identified in the consensus statement of the International Patient Decision Aids Standards Collaboration. We incorporated field-testing into the development of a Web-based, prostate-specific...
journal_title:Journal of medical Internet research
pub_type: 杂志文章
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abstract:BACKGROUND:Youth mental health is a significant public health concern due to the high prevalence of mental health problems in this population and the low rate of those affected seeking help. While it is increasingly recognized that prevention is better than cure, most youth prevention programs have utilized interventio...
journal_title:Journal of medical Internet research
pub_type: 杂志文章,随机对照试验
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abstract:BACKGROUND:In many countries, there has been substantial progress in establishing the electronic transmission of patients' health information between health care providers, but little is known about how best to engage patients in the process. OBJECTIVE:We explored patients' views about sharing of electronic health inf...
journal_title:Journal of medical Internet research
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abstract:BACKGROUND:Although vaccination rates are above the threshold for herd immunity in South Korea, a growing number of parents have expressed concerns about the safety of vaccines. It is important to understand these concerns so that we can maintain high vaccination rates. OBJECTIVE:The aim of this study was to develop a...
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journal_title:Journal of medical Internet research
pub_type: 杂志文章,随机对照试验
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更新日期:2019-08-06 00:00:00
abstract:BACKGROUND:Walking represents a large part of daily physical activity. It reduces both overall and cardiovascular diseases and mortality and is suitable for cardiac patients. A step counter measures walking activity and might be a motivational tool to increase and maintain physical activity. There is a lack of knowledg...
journal_title:Journal of medical Internet research
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abstract:BACKGROUND:The early diagnosis of various gastrointestinal diseases can lead to effective treatment and reduce the risk of many life-threatening conditions. Unfortunately, various small gastrointestinal lesions are undetectable during early-stage examination by medical experts. In previous studies, various deep learnin...
journal_title:Journal of medical Internet research
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abstract:BACKGROUND:Chronic pain in childhood is increasingly being recognized as a significant clinical problem for children and their families. Previous research has identified that families want information about the causes of their child's chronic pain, treatment options, and effective strategies to help their child cope wi...
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abstract:BACKGROUND:Mobile health apps have emerged as useful tools for patients and clinicians alike, sharing health information or assisting in clinical decision-making. Prostate cancer (PCa) risk calculator mobile apps have been introduced to assess risks of PCa and high-grade PCa (Gleason score ≥7). The Rotterdam Prostate C...
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abstract:BACKGROUND:To improve working conditions and prevent illness and deaths related to overwork, the Taiwanese government in 2015, 2016, and 2018 amended regulations regarding working time, overtime, shifts, and rest days. Such policy changes may lead to a rising public awareness of overwork-related issues, which may in tu...
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abstract:BACKGROUND:Although "infodemiological" methods have been used in research on coronavirus disease (COVID-19), an examination of the extent of infodemic moniker (misinformation) use on the internet remains limited. OBJECTIVE:The aim of this paper is to investigate internet search behaviors related to COVID-19 and examin...
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abstract:BACKGROUND:Existing influenza surveillance in the United States is focused on the collection of data from sentinel physicians and hospitals; however, the compilation and distribution of reports are usually delayed by up to 2 weeks. With the popularity of social media growing, the Internet is a source for syndromic surv...
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abstract:BACKGROUND:Smartphone apps, fitness trackers, and online social networks have shown promise in weight management and physical activity interventions. However, there are knowledge gaps in identifying the most effective and engaging interventions and intervention features preferred by their users. OBJECTIVE:This 6-month...
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更新日期:2020-12-08 00:00:00
abstract:BACKGROUND:Coronavirus disease (COVID-19) has spread explosively worldwide since the beginning of 2020. According to a multinational consensus statement from the Fleischner Society, computed tomography (CT) is a relevant screening tool due to its higher sensitivity for detecting early pneumonic changes. However, physic...
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更新日期:2012-01-11 00:00:00
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journal_title:Journal of medical Internet research
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更新日期:2017-11-30 00:00:00
abstract:BACKGROUND:An understanding of the factors that predict retention and website use are critical to the development of effective Web-based weight loss interventions. However, poor retention (dropout attrition) and website utilization (nonusage attrition) are major inhibitors to the effectiveness of Web-based programs. O...
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