To understand the vulnerability of patients with cancer to central line-associated bloodstream infections related to tunneled central venous catheters (CVCs), patients were asked to describe their line care at home and in clinic and to characterize their knowledge and experience managing CVCs. Forty-five adult patients with cancer were recruited to participate. Patients were interviewed about the type of line, duration of use, and observations of variations in line care. They also were asked about differences between line care at home and in the clinic, precautions taken when bathing, and their education regarding line care. Demographic information and primary cancer diagnosis were taken from the patients' medical records. Patients with hematologic and gastrointestinal malignancies were heavily represented. The majority had tunneled catheters with subcutaneous implanted ports. Participants identified variations in practice among nurses who cared for them. Although many participants expressed confidence in their knowledge of line care, some were uncertain about what to do if the dressing became loose or wet, or how to recognize an infection. Patients seemed to be astute observers of their own care and offered insights into practice variation. Their observations show that CVC care practices should be standardized, and educational interventions should be created to address patients' knowledge deficits.
Keywords: central line-associated bloodstream infection; central venous catheter; patient and family engagement; practice variation; quality improvement.