Identifying critically important vascular access outcomes for trials in haemodialysis: an international survey with patients, caregivers and health professionals

Nephrol Dial Transplant. 2020 Apr 1;35(4):657-668. doi: 10.1093/ndt/gfz148.

Abstract

Background: Vascular access outcomes reported across haemodialysis (HD) trials are numerous, heterogeneous and not always relevant to patients and clinicians. This study aimed to identify critically important vascular access outcomes.

Method: Outcomes derived from a systematic review, multi-disciplinary expert panel and patient input were included in a multilanguage online survey. Participants rated the absolute importance of outcomes using a 9-point Likert scale (7-9 being critically important). The relative importance was determined by a best-worst scale using multinomial logistic regression. Open text responses were analysed thematically.

Results: The survey was completed by 873 participants [224 (26%) patients/caregivers and 649 (74%) health professionals] from 58 countries. Vascular access function was considered the most important outcome (mean score 7.8 for patients and caregivers/8.5 for health professionals, with 85%/95% rating it critically important, and top ranked on best-worst scale), followed by infection (mean 7.4/8.2, 79%/92% rating it critically important, second rank on best-worst scale). Health professionals rated all outcomes of equal or higher importance than patients/caregivers, except for aneurysms. We identified six themes: necessity for HD, applicability across vascular access types, frequency and severity of debilitation, minimizing the risk of hospitalization and death, optimizing technical competence and adherence to best practice and direct impact on appearance and lifestyle.

Conclusions: Vascular access function was the most critically important outcome among patients/caregivers and health professionals. Consistent reporting of this outcome across trials in HD will strengthen their value in supporting vascular access practice and shared decision making in patients requiring HD.

Keywords: core outcome set; haemodialysis; outcome; survey; vascular access.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Aged, 80 and over
  • Caregivers / statistics & numerical data*
  • Clinical Trials as Topic / standards*
  • Female
  • Health Personnel / statistics & numerical data*
  • Humans
  • Kidney Failure, Chronic / therapy*
  • Male
  • Middle Aged
  • Outcome Assessment, Health Care / standards*
  • Patient Satisfaction
  • Renal Dialysis / standards*
  • Surveys and Questionnaires
  • Vascular Access Devices / standards*
  • Young Adult