OBJECTIVES : Hemodialysis patients have health-related quality of life (HRQOL) issues related to vascular access (VA) not captured by existing HRQOL measures since existing tools are not specific to hemodialysis VA. We conducted a literature review and drafted a conceptual framework, followed by focus groups across the US as a first step in developing a tool to assess VA-targeted HRQOL in hemodialysis.

METHODS : Four focus groups (CA, FL, MI, TN) involved 37 patients whose characteristics include: 57% female; 49% aged 55-64 years (range: 24–78 years); race/ethnicity (57% African American, 5% Asian, 32% White, 5% Hispanic); mean time with kidney failure 8 years (1-18.5 years); with fistula (65%), graft (27%) and catheter (8%) as current access types. Participants were asked to discuss how their HRQOL is affected by VA. Focus groups were audiotaped, individual responses were coded by 2 reviewers and rectified by consensus, and thematic content analyses were conducted.

RESULTS : Participants identified worry and fear, physical symptoms, and appearance as the greatest impacts of VA. Problems with sleep, personal hygiene, and other activities of daily living were also mentioned frequently as burdensome. Infection risk, cannulation, durability and failure of access, and interventions/revisions required to maintain an access were key drivers of emotional impact. Needle pain, skin problems, swelling/bruising, and numbness/tingling were among the leading physical symptoms that were burdensome. Personal appearance, particularly concerns about clothing choice, and avoidance or awkwardness in social settings were the top social impacts. Participants also voiced concerns about self-care and vigilance in the clinic to ensure continued access function. Results confirmed the initial conceptual framework.

CONCLUSIONS : Focus group participants identified core areas of HRQOL affected by VA, several of which are not fully addressed by existing measures. These results are actionable for further item development and pilot testing.