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.

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.

Department

Description

Provenance

Citation

Published Version (Please cite this version)

10.1093/ofid/ofab622

Publication Info

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.

This is constructed from limited available data and may be imprecise. To cite this article, please review & use the official citation provided by the journal.

Scholars@Duke

King

Heather Alyse King

Assistant Professor in Population Health Sciences

Areas of expertise: Implementation Science, Health Services Research, and Health Measurement

Ruffin

Felicia Ruffin

Research Program Leader, Tier 1
Lane

Hannah Grace Lane

Assistant Professor in Population Health Sciences

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


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