Patient Reported Outcomes for Dialysis Vascular Access

Vascular access is a determining factor of outcomes for the more than 700,000 people on dialysis with kidney failure in the US. Access-related clinical events, such as infection and thrombosis, are clear drivers of clinical outcomes and costs, and are well differentiated between access types. While the impact on patients of missing a dialysis session in order to have a clot removed and a catheter placed may be obvious, the full patient experience with the vascular access failure cycle is not well characterized. In addition to the time and resource burden of these events, patients also experience other physical symptoms, social impacts, changes in family relationships, and emotional effects all unique to vascular access which is separate from the general process of hemodialysis.[1-5] Importantly, these health-related quality of life (HRQOL) impacts across different access types are not well established. Reflecting the need for greater patient engagement in research, the SONG-HD group recently published a systematic review of clinical trials in maintenance hemodialysis and showed that PROs were used very infrequently in trials, with only 11% of 168 trials included patient-reported pain measures and only 3% included Quality Of Life (QOL) measures.[6] The SONG-HD group has also advocated for comprehensive measurement of patients' quality of life as a function of the "core measure" of access function.[7] Based on our literature-based gap assessment and qualitative research on potential barriers to optimal use of PROs, the Working Group will recommend solutions for overcoming barriers and outline study designs to improve the utility of access-related HRQOL measures to future observational studies and clinical trials in hemodialysis. The workgroup developed a manuscript summarizing the findings to catalyze further uptake of access-specific Patient Reported Outcomes (PROs). 

References

1. Hays RD et al. Development of the kidney disease quality-of-life (KDQOL) instrument. Quality of Life Research 1994;3(5): 329-38.
2. Quinn RR et al. The Vascular Access Questionnaire: assessing patient-reported views of vascular access. The Journal of Vascular Access 2008; 9: 122-128.
3. Nordyke RJ et al. Vascular access-specific HRQOL impacts among hemodialysis patients: The HARQ project focus group results. Poster Presented at ISPOR 2018, May 19-23, 2018, Baltimore.
4. Casey JR et al. Patients' perspectives on hemodialysis vascular access: A systematic review of qualitative studies. Am J Kidney Dis 2014;64(6):937-953.
5. Taylor MJ et al. "You know your own fistula, it becomes a part of you" - Patient perspectives on vascular access: A semi-structured interview study. Hemodialysis International 2016; 20:5-14.
6. Viecelli AK, et al. Vascular Access Outcomes Reported in Maintenance Hemodialysis Trials: A Systematic Review. Am J Kidney Dis. 2018 Mar;71(3):382-391.
7. Viecelli AK, et al. SONG-HD Vascular Access Workshop Investigators. Report of the Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) Consensus Workshop on Establishing a Core Outcome Measure