TY - JOUR
T1 - Identifying critically important vascular access outcomes for trials in haemodialysis
T2 - An international survey with patients, caregivers and health professionals
AU - Viecelli, Andrea K.
AU - Howell, Martin
AU - Tong, Allison
AU - Teixeira-Pinto, Armando
AU - O'Lone, Emma
AU - Ju, Angela
AU - Craig, Jonathan C.
AU - Hooi, Lai Seong
AU - Lee, Timmy
AU - Lok, Charmaine E.
AU - Polkinghorne, Kevan R.
AU - Quinn, Robert R.
AU - Vachharajani, Tushar J.
AU - Vanholder, Raymond
AU - Zuo, Li
AU - Tordoir, Jan
AU - Pecoits-Filho, Roberto
AU - Yuo, Theodore
AU - Kopperschmidt, Pascal
AU - Smith, Rob
AU - Irish, Ashley B.
AU - Mori, Trevor A.
AU - Pascoe, Elaine M.
AU - Johnson, David W.
AU - Hawley, Carmel M.
N1 - Funding Information:
D.W.J. reports grants and personal fees from Baxter Healthcare and Fresenius Medical Care, other from Amgen, personal fees from AstraZeneca and grants from the National Health and Medical Research Council of Australia during the conduct of the study. R.R.Q. has a patent DMAR Software Platform for Quality Improvement issued. C.M.H. reports grants from Baxter Australia, Fresenius Medical Care, Shire and the Medical Research Council of Australia during the conduct of the study; other from Johnson and Johnson and GlaxoSmithKline, personal fees and other from Otsuka and grants from PKD Foundation of Australia outside the submitted work. A.B.I. reports personal fees from Amgen Australia and Astellas Pharmaceuticals outside the submitted work. R.P.-F. reports grants from Fresenius Medical Care and personal fees from AstraZeneca, Akebia, Fresenius Medical Care and Novo Nordisk outside the submitted work. All other authors have no conflicts of interest to disclose.
Funding Information:
This project is supported by a National Health and Medical Research Council (NHMRC) programme grant (1092597) and project grant (1098815). A.K.V. receives grant support from the NHMRC Medical Postgraduate Scholarship (1114539) and the Royal Australasian College of Physicians (Jacquot NHMRC Award for Excellence). E.O. receives support from the NHMRC Medical Postgraduate Scholarship (1114189), A.T. and T.A.M. are supported by NHMRC Research Fellowships (1106716 and 1136046) and D.W.J. is supported by an NHMRC Practitioner Fellowship (1117534). The funding organization had no role in the design and conduct of the study; collection, management, analysis and interpretation of the data or preparation, review or approval of the manuscript.
Publisher Copyright:
© 2019 The Author(s) 2019. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.
Copyright:
Copyright 2020 Elsevier B.V., All rights reserved.
PY - 2020/4/1
Y1 - 2020/4/1
N2 - 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.
AB - 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.
KW - Core outcome set
KW - Haemodialysis
KW - Outcome
KW - Survey
KW - Vascular access
UR - http://www.scopus.com/inward/record.url?scp=85073996412&partnerID=8YFLogxK
U2 - 10.1093/ndt/gfz148
DO - 10.1093/ndt/gfz148
M3 - Article
C2 - 31369099
AN - SCOPUS:85073996412
SN - 0931-0509
VL - 35
SP - 657
EP - 668
JO - Nephrology Dialysis Transplantation
JF - Nephrology Dialysis Transplantation
IS - 4
ER -