Patient Prefer Adher
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Patient Prefer Adher · Jan 2018
A patient and community-centered approach selecting endpoints for a randomized trial of a novel advance care planning tool.
Despite a movement toward patient-centered outcomes, best practices on how to gather and refine patients' perspectives on research endpoints are limited. Advanced care planning (ACP) is inherently patient centered and would benefit from patient prioritization of endpoints for ACP-related tools and studies. ⋯ Using a novel combination of engagement and research techniques provided the opportunity to understand which endpoints were most important to patients and families and fostered framework development clarifying the differential contributions of engagement and research. Results from this study ultimately changed the content and evaluation of the ACP video.
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Patient Prefer Adher · Jan 2018
The impact of disease activity and psychological status on quality of life for Chinese patients with primary Sjögren's syndrome.
The primary purpose of the present study was to survey the quality of life (QoL) in primary Sjögren's syndrome (pSS) and to analyze the relationships between disease activity, anxiety/depression, fatigue, pain, age, oral disorders, impaired swallowing, sicca symptoms, and QoL. ⋯ pSS patients had a considerably impaired QoL compared to the controls, and pSS could negatively affect the QoL of patients. Measuring QoL should be considered as a vital part of the comprehensive evaluation of the health status of pSS patients, which could contribute some valuable clues in improving the management of disease and treatment decisions.
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Patient Prefer Adher · Jan 2018
Current and future options for opioid use disorder: a survey assessing real-world opinion of service users on novel therapies including depot formulations of buprenorphine.
Integrated treatment for opioid use disorder (OUD) includes opioid agonist therapy (OAT) such as methadone and buprenorphine with well-evidenced benefits. Treatment with typical existing oral medications is associated with burdens and limits to successful outcomes (frequent dosing, attendance for collection/consumption, difficulty in achieving optimal dosing, misuse, diversion, accidental exposure, and stigma from the treatment process). Novel medications include injected depot formulations with less frequent administration, providing consistent drug levels after dosing. This survey assesses the opinion of those with OUD treatment services lived experience to inform future medication choices. ⋯ This survey provides a useful initial record of the opinions of people experienced in OUD treatment services on novel depot medications, which may result in important benefits. Care providers and policy makers should continue to work with those with lived experience to understand the specific opportunity provided by such innovation.
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Patient Prefer Adher · Jan 2018
Patient and physician preferences for attributes of coronary revascularization.
Patients with a diagnosis of coronary artery disease (CAD) may face important decisions regarding treatment options, with the "right choice" depending on the relative weights of risks and benefits. Studies performed as discrete choice experiments are used to estimate these weights, and attribute selection is an essential step in the design of these studies. Attributes not included in the design cannot be analyzed. In this study, we aimed to elicit, rank, and rate attributes that may be considered important to patients and physicians who must choose between angioplasty and surgery for coronary revascularization. ⋯ Decisions regarding the best treatment option for patients with CAD should be made based on differences in risk and the patient's preference regarding the most relevant endpoints. We elicited, ranked, and rated 14 attributes related to CAD treatment options. This list of attributes may help researchers who seek to perform future preference studies of CAD treatment options.
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Patient Prefer Adher · Jan 2018
Consumer opinions on adverse events associated with medicines and vaccines.
Despite the availability of an Australian consumer adverse event (AE) reporting system for over 50 years, reporting rates remain low. A comprehensive understanding of consumer perceptions and experiences regarding AEs is needed to further ascertain factors impacting their engagement in AE reporting. ⋯ Consumers' lack of awareness of AE reporting systems was evident. With the complexities inherent in benefit/harm risk appraisal, information seeking, and AE reporting preferences, better consumer understanding of AEs and the systems available for reporting is needed.