Patients' Experiences With Staphylococcus aureus and Gram-negative Bacterial Bloodstream Infections: A Qualitative Descriptive Study and Concept Elicitation Phase To Inform Measurement of Patient-reported Quality of Life

Abstract

Background: Although Staphylococcus aureus and gram-negative bacterial bloodstream infections (SAB/GNB) cause substantial morbidity, little is known regarding patient perceptions' of their impact on quality of life (QOL). Guidance for assessing QOL and disease-specific measures are lacking. We conducted a descriptive qualitative study to gain an in-depth understanding of patients' experiences with SAB/GNB and concept elicitation phase to inform a patient-reported QOL outcome measure.

Methods: We conducted prospective one-time, in-depth, semi-structured, individual, qualitative telephone interviews 6- 8 weeks following bloodstream infection with either SAB or GNB. Patients were enrolled in an institutional registry (tertiary academic medical center) for SAB or GNB. Interviews were audio-recorded, transcribed, and coded. Directed content analysis identified a priori and emergent themes. Theme matrix techniques were used to facilitate analysis and presentation.

Results: Interviews were completed with 30 patients with SAB and 31 patients with GNB. Most patients were at or near the end of intravenous antibiotic treatment when interviewed. We identified 3 primary high-level concepts: impact on QOL domains, time as a critical index, and sources of variability across patients. Across both types of bloodstream infection, the QOL domains most impacted were physical and functional, which was particularly evident among patients with SAB.

Conclusions: SAB/GNB impact QOL among survivors. In particular, SAB had major impacts on multiple QOL domains. A combination of existing, generic measures that are purposefully selected and disease-specific items, if necessary, could best capture these impacts. Engaging patients as stakeholders and obtaining their feedback is crucial to conducting patient-centered clinical trials and providing patient-centered care.

Keywords: bacterial bloodstream infections; measure development; patient-reported outcomes; quality of life.

Figure 1.

Project flow diagram (621 call attempts). Abbreviations: GNB, gram-negative bacterial bloodstream infection; SAB, Staphylococcus aureus bloodstream infection.

Figure 2.

Participant flow diagram. Passive refusal indicates patients who were consented for the study but could not be reached for qualitative interview. Note: If the study team found that a participant’s current health state, including acute psychiatric illness, may have impacted his or her ability to complete the interview, the participant was no longer eligible to proceed with the qualitative interview. Determining eligibility was up to the discretion of the PI and/or clinical team. *These patients were not approached for this study because the majority were accompanied by a legally authorized representative who signed the Bloodstream Infection Biorepository consent on their behalf, rendering them unapproachable for this study due to exclusion criteria. Other reasons include co-occurrence of SAB and GNB, having already reached study recruitment goal, and being unable to consent due to pain. Reasons were based on 10 patients. Abbreviations: GNB, gram-negative bacterial bloodstream infection; PI, principal investigator; SAB, Staphylococcus aureus bloodstream infection; UTR, unable to reach.

Figure 3.

Concept map.