Abstract
BackgroundEnd stage kidney disease and hemodialysis dependence are associated with impairments in health-related quality of life (HRQOL), which may be related to vascular access (VA). Few HRQOL measures are VA-specific and none differentiate HRQOL impact by VA type. We developed a VA-targeted HRQOL measure to distinguish the impact of fistulas, grafts and catheters.MethodsWe created an initial item pool based on literature review and then conducted focus groups at 4 US sites with 37 adults and interviews with nine dialysis clinicians about VA’s impact on HRQOL. We then drafted the Hemodialysis Access-Related Quality of Life (HARQ) measure and cognitively tested it with 17 hemodialysis patients. Focus group and cognitive interview participants were diverse in age, gender, years on dialysis, and VA.ResultsWe identified six domains for the HARQ: symptoms, physical functioning, emotional impacts, social and role functioning, sleep, and care-related burdens. Cognitive interviews indicated that items were easily understood and supported content validity. Attributing HRQOL impact to VA as opposed to other hemodialysis burden was challenging for some items. Some items were dropped that were considered redundant by patients, limitations while dressing was added, and reference to VA-specific impact was included for each item. The average Flesch-Kincaid reading grade level for the revised 47-item HARQ was 5.3.ConclusionsThe HARQ features VA-specific content not addressed in other HRQOL measures, making it ideal for comparisons of different VA types and new VA technologies. The psychometric properties of the HARQ will be evaluated in future research.
Highlights
End stage kidney disease and hemodialysis dependence are associated with impairments in healthrelated quality of life (HRQOL), which may be related to vascular access (VA)
HD patients often refer to their VA as their lifeline, reflecting the centrality of VA to hemodialysis and the impact that VA has on their dialysis experience and health-related quality of life (HRQOL) [1,2,3]
Our qualitative research demonstrated that the Hemodialysis Access-Related Quality of Life (HARQ) captures concepts of relevance to dialysis patients and findings were confirmed with practicing nephrologists, dialysis clinicians, and experts in HRQOL research
Summary
End stage kidney disease and hemodialysis dependence are associated with impairments in healthrelated quality of life (HRQOL), which may be related to vascular access (VA). We developed a VA-targeted HRQOL measure to distinguish the impact of fistulas, grafts and catheters. End Stage Kidney Disease (ESKD) patients on hemodialysis must rely on one of several modes of vascular access (VA), including arteriovenous fistulae (AVF), grafts (AVG), and central venous catheters (CVC). HD patients often refer to their VA as their lifeline, reflecting the centrality of VA to hemodialysis and the impact that VA has on their dialysis experience and health-related quality of life (HRQOL) [1,2,3]. A systematic review of hemodialysis clinical trials showed that patient-reported outcomes were used very infrequently; only 11% of 168 trials included patient-reported pain measures and only 3% included HRQOL measures [11]
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