Patients' Experiences With <i>Staphylococcus aureus</i> and Gram-Negative Bacterial Bloodstream Infections: Results From Cognitive Interviews to Inform Assessment of Health-Related Quality of Life.
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2022-02
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Abstract
Background
We previously conducted a concept elicitation study on the impact of Staphylococcus aureus and gram-negative bacterial bloodstream infections (SAB/GNB) on health-related quality of life (HRQoL) from the patient's perspective and found significant impacts on HRQoL, particularly in the physical and functional domains. Using this information and following guidance on the development of patient-reported outcome (PRO) measures, we determined which combination of measures and items (ie, specific questions) would be most appropriate in a survey assessing HRQoL in bloodstream infections.Methods
We selected a variety of measures/items from the Patient-Reported Outcomes Measurement Information System (PROMIS) representing different domains. We purposefully sampled patients ~6-12 weeks post-SAB/GNB and conducted 2 rounds of cognitive interviews to refine the survey by exploring patients' understanding of items and answer selection as well as relevance for capturing HRQoL.Results
We interviewed 17 SAB/GNB patients. Based on the first round of cognitive interviews (n = 10), we revised the survey. After round 2 of cognitive interviewing (n = 7), we finalized the survey to include 10 different PROMIS short forms/measures of the most salient HRQoL domains and 2 adapted questions (41 items total) that were found to adequately capture HRQoL.Conclusions
We developed a survey from well-established PRO measures that captures what matters most to SAB/GNB patients as they recover. This survey, uniquely tailored to bloodstream infections, can be used to assess these meaningful, important HRQoL outcomes in clinical trials and in patient care. Engaging patients is crucial to developing treatments for bloodstream infections.Type
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King, Heather A, Sarah B Doernberg, Kiran Grover, Julie Miller, Megan Oakes, Tsai-Wei Wang, Molly McFatrich, Felicia Ruffin, et al. (2022). Patients' Experiences With Staphylococcus aureus and Gram-Negative Bacterial Bloodstream Infections: Results From Cognitive Interviews to Inform Assessment of Health-Related Quality of Life. Open forum infectious diseases, 9(2). p. ofab622. 10.1093/ofid/ofab622 Retrieved from https://hdl.handle.net/10161/29624.
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Scholars@Duke
Heather Alyse King
Areas of expertise: Implementation Science, Health Services Research, and Health Measurement
Felicia Ruffin
Hannah Grace Lane
I am an implementation scientist with expertise in mixed methods and community-engaged research. My research focuses on improve implementation of federal policies that increase access to nutritious foods and physical activity for children facing social and economic disadvantages.
My research centers around 3 primary focus areas:
(1) optimizing implementation of evidence-based healthy eating and physical activity policies and practices in child-serving settings (mostly schools);
(2) studying implementation flexibilities of federal child nutrition assistance policies during COVID-19
(3) engaging children and adolescents as active participants in implementation research, including developing and testing pragmatic, age-appropriate evaluation metrics;
The ultimate goal of my research is to develop and disseminate strategies that improve health-promoting policy implementation in under-resourced community settings and, ultimately, reduce pediatric health inequities.
My methods expertise is broadly applicable across child and adolescent health outcomes and community settings. This expertise includes: implementation and dissemination methods, stakeholder-driven research, youth participatory research methods, mixed methods evaluation, pragmatic measures development (including rapid qualitative data collection and analysis), organizational capacity-building, theory-based program development, policy implementation.
Areas of Expertise: Implementation Science, Health Behavior, and Health Management
Hayden Barry Bosworth
Dr. Bosworth is a health services researcher and Deputy Director of the Center of Innovation to Accelerate Discovery and Practice Transformation (ADAPT) at the Durham VA Medical Center. He is also Vice Chair of Education and Professor of Population Health Sciences. He is also a Professor of Medicine, Psychiatry, and Nursing at Duke University Medical Center and Adjunct Professor in Health Policy and Administration at the School of Public Health at the University of North Carolina at Chapel Hill. His research interests comprise three overarching areas of research: 1) clinical research that provides knowledge for improving patients’ treatment adherence and self-management in chronic care; 2) translation research to improve access to quality of care; and 3) eliminate health care disparities.
Dr. Bosworth is the recipient of an American Heart Association established investigator award, the 2013 VA Undersecretary Award for Outstanding Achievement in Health Services Research (The annual award is the highest honor for VA health services researchers), and a VA Senior Career Scientist Award. In terms of self-management, Dr. Bosworth has expertise developing interventions to improve health behaviors related to hypertension, coronary artery disease, and depression, and has been developing and implementing tailored patient interventions to reduce the burden of other chronic diseases. These trials focus on motivating individuals to initiate health behaviors and sustaining them long term and use members of the healthcare team, particularly pharmacists and nurses. He has been the Principal Investigator of over 30 trials resulting in over 400 peer reviewed publications and four books. This work has been or is being implemented in multiple arenas including Medicaid of North Carolina, private payers, The United Kingdom National Health System Direct, Kaiser Health care system, and the Veterans Affairs.
Areas of Expertise: Health Behavior, Health Services Research, Implementation Science, Health Measurement, and Health Policy
Thomas Lawrence Holland
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