Symptoms across the phases of the migraine cycle from the patient's perspective: Results of the MiCOAS qualitative study.

Objective: To better understand the breadth and frequency of symptoms across the phases of the migraine cycle using data captured from qualitative patient interviews conducted through the Migraine Clinical Outcome Assessment System (MiCOAS) project.

Background: People living with migraine experience a range of symptoms across the pre-headache, headache, post-headache, and interictal phases of the migraine cycle. Although clinical diagnostic criteria and clinical trial endpoints focus largely on cardinal symptoms or monthly migraine days, migraine symptom profiles are far more complex.

The impacts of migraine on functioning: Results from two qualitative studies of people living with migraine.

Objective: To describe the impact of migraine on functioning based on comprehensive data collection, analysis, and reporting of patients' experiences.

Background: Qualitative research conducted to understand patients' perspectives on living with migraine has often focused on narrow topics or specific groups of patients or has been selectively reported.

Methods: Qualitative interviews with 71 participants were conducted during two concept elicitation studies as part of the Migraine Clinical Outcome Assessment System (MiCOAS) project, an FDA grant-funded program designed to develop a core set of patient-centered outcome measures for migraine clinical trials.

Priority acute and preventive migraine treatment benefits: Results of the Migraine Clinical Outcome Assessment System (MiCOAS) qualitative study of people living with migraine.

Background: There is renewed emphasis on including patients in determining, defining, and prioritizing outcomes for migraine treatment.

Objectives: To obtain insights directly from people living with migraine on their priorities for treatment.

Methods: A total of 40 qualitative interviews were conducted as part of the Migraine Clinical Outcome Assessment System project, a United States Food and Drug Administration grant-funded program to develop a core set of patient-centered outcome measures for migraine clinical trials.

Patient-reported outcome measures for individuals with temporomandibular joint disorders: a systematic review and evaluation.

Objective: We used consensus-based, systematic protocols to evaluate the reliability and validity of patient-reported outcome measures (PROMs) for use in documenting treatment outcomes for temporomandibular disorders (TMDs).

Study Design: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we conducted a focused search of 5 literature databases resulting in a yield of 445 articles that qualified for full-text review. Our review identified 124 PROMs, from which we selected 19 directly related to symptoms of TMD including temporomandibular joint (TMJ) function.

Understanding the Influence and Impact of Stakeholder Engagement in Patient-centered Outcomes Research: a Qualitative Study.

Background: Engaging patients and other stakeholders as partners in research offers promise in improving the relevance and usefulness of research findings.

Objective: To explore the influence and impact of patient and other stakeholder engagement on the planning and conduct of comparative effectiveness research studies.

Design: Qualitative study with virtual, hour-long semi-structured interviews.

Omissions of Care in Nursing Homes: A Uniform Definition for Research and Quality Improvement.

Omission of care in US nursing homes can lead to increased risk for harm or adverse outcomes, decreased quality of life for residents, and increased healthcare expenditures. However, scholars and policymakers in long-term care have taken varying approaches to defining omissions of care, which makes efforts to prevent them challenging. Subject matter experts and a broad range of nursing home stakeholders participated in iterative rounds of engagement to identify key concepts and aspects of omissions of care and develop a consensus-based definition that is clear, meaningful, and actionable for nursing homes.

Omissions of Care in Nursing Home Settings: A Narrative Review.

Objectives: This review aims to (1) examine existing definitions of omissions of care in the healthcare environment and associated characteristics and (2) outline adverse events that may be attributable to omissions of care among nursing home populations.

Design: Nonsystematic review. A literature search for published articles on care omissions in nursing home settings and related adverse events was performed using the databases PubMed, Web of Science, EBSCO Academic Search Premier, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL) until January 2019.

What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings.

Background: US research organizations increasingly are supporting patient and stakeholder engagement in health research with a goal of producing more useful, relevant and patient-centered evidence better aligned with real-world clinical needs. The Patient-Centered Outcomes Research Institute (PCORI) engages patients, family caregivers and other health-care stakeholders, including clinicians, payers and policymakers, as active partners in prioritizing, designing, conducting and disseminating research as a key strategy to produce useful evidence for health-care decision making.

Objective: To inform effective engagement practices and policies, we sought to understand what motivates patients and caregivers to engage as partners on PCORI-funded research projects and how such engagement changed their lives.

An informed public's views on reducing antibiotic overuse.

Objective: To understand public attitudes about and recommendations to address antibiotic overuse by employing public deliberation (a method for eliciting informed input on value-laden issues).

Data Sources/study Setting: Participants in 24 Community Deliberation groups (CD; n = 263), four Citizens' Panel groups (CP; n = 96), and a control group (n = 348). Data were collected in 2012 in four U.

Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.

A medical information commons (MIC) is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S.

Public Mistrust of the U.S. Health Care System's Profit Motives: Mixed-Methods Results from a Randomized Controlled Trial.

Background: Decision makers are increasingly tasked with reducing health care costs, but the public may be mistrustful of these efforts. Public deliberation helps gather input on these types of issues by convening a group of diverse individuals to learn about and discuss values-based dilemmas.

Objective: To explore public perceptions of health care costs and how they intersect with medical mistrust.

Setting Boundaries: Public Views on Limiting Patient and Physician Autonomy in Health Care Decisions.

We obtained and qualitatively analyzed input from more than nine hundred citizens during seventy-six public deliberation sessions about patient and physician autonomy in decision making, setting health care boundaries, and the tensions among competing social values. Generally, participants resisted interference with the patient-physician relationship and believed strongly in the freedom of patient and physician to control individual medical decisions. However, during deliberation participants identified two situations where boundaries and regulations in health care were more acceptable: protecting people from harm and allocating limited resources.

Understanding An Informed Public's Views On The Role Of Evidence In Making Health Care Decisions.

Policy makers and practitioners increasingly believe that medical evidence plays a critical role in improving care and health outcomes and lowering costs. However, public understanding of the role of evidence-based care may be different. Public deliberation is a process that convenes diverse citizens and has them learn about and consider ethical or values-based dilemmas and weigh alternative views.

Effectiveness of public deliberation methods for gathering input on issues in healthcare: Results from a randomized trial.

Unlabelled: Public deliberation elicits informed perspectives on complex issues that are values-laden and lack technical solutions. This Deliberative Methods Demonstration examined the effectiveness of public deliberation for obtaining informed public input regarding the role of medical evidence in U.S.