27 research outputs found

    Patient experience and challenges in group concept mapping for clinical research.

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    BACKGROUND AND OBJECTIVE: Group concept mapping (GCM) is a research method that engages stakeholders in generating, structuring and representing ideas around a specific topic or question. GCM has been used with patients to answer questions related to health and disease but little is known about the patient experience as a participant in the process. This paper explores the patient experience participating in GCM as assessed with direct observation and surveys of participants. METHODS: This is a secondary analysis performed within a larger study in which 3 GCM iterations were performed to engage patients in identifying patient-important outcomes for diabetes care. Researchers tracked the frequency and type of assistance required by each participant to complete the sorting and rating steps of GCM. In addition, a 17-question patient experience survey was administered over the telephone to the participants after they had completed the GCM process. Survey questions asked about the personal impact of participating in GCM and the ease of various steps of the GCM process. RESULTS: Researchers helped patients 92 times during the 3 GCM iterations, most commonly to address software and computer literacy issues, but also with the sorting phase itself. Of the 52 GCM participants, 40 completed the post-GCM survey. Respondents averaged 56 years of age, were 50% female and had an average hemoglobin A1c of 9.1%. Ninety-two percent (n = 37) of respondents felt that they had contributed something important to this research project and 90% (n = 36) agreed or strongly agreed that their efforts would help others with diabetes. Respondents reported that the brainstorming session was less difficult when compared with sorting and rating of statements. DISCUSSION: Our results suggest that patients find value in participating in GCM. Patients reported less comfort with the sorting step of GCM when compared with brainstorming, an observation that correlates with our observations from the GCM sessions. Researchers should consider using paper sorting methods and objective measures of sorting quality when using GCM in patient-engaged research to improve the patient experience and concept map quality

    Emergency Medicine Clinician Experiences Addressing Uncertainty in First-Trimester Bleeding.

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    The purpose of this work is to understand Emergency Department (ED) clinicians\u27 experiences in communicating uncertainty about first-trimester bleeding (FTB) and their need for training on this topic. This cross-sectional study surveyed a national sample of attending physicians and advanced practice providers (APPs). The survey included quantitative and qualitative questions about communicating with patients presenting with FTB. These questions assessed clinicians\u27 frequency encountering challenges, comfort, training, prior experience, and interest in training on the topic. Of 402 respondents, 54% reported that they encountered challenges at least sometimes when discussing FTB with patients where the pregnancy outcome is uncertain. While the majority (84%) were at least somewhat prepared for these conversations from their training, which commonly addressed the diagnostic approach to this scenario, 39% strongly or moderately agreed that they could benefit from training on the topic. Because the majority of ED clinicians identified at least sometimes encountering challenges communicating with pregnant patients about FTB, our study indicates a need exists for more training in this skill

    Determining value in health technology assessment: Stay the course or tack away?

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    The economic evaluation of new health technologies to assess whether the value of the expected health benefits warrants the proposed additional costs has become an essential step in making novel interventions available to patients. This assessment of value is problematic because there exists no natural means to measure it. One approach is to assume that society wishes to maximize aggregate health, measured in terms of quality-adjusted life-years (QALYs). Commonly, a single 'cost-effectiveness' threshold is used to gauge whether the intervention is sufficiently efficient in doing so. This approach has come under fire for failing to account for societal values that favor treating more severe illness and ensuring equal access to resources, regardless of pre-existing conditions or capacity to benefit. Alternatives involving expansion of the measure of benefit or adjusting the threshold have been proposed and some have advocated tacking away from the cost per QALY entirely to implement therapeutic area-specific efficiency frontiers, multicriteria decision analysis or other approaches that keep the dimensions of benefit distinct and value them separately. In this paper, each of these alternative courses is considered, based on the experiences of the authors, with a view to clarifying their implications
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