Report of the Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) Consensus Workshop on Establishing a Core Outcome Measure for~Hemodialysis Vascular Access

Charmaine E. Lok , Kevan R. Polkinghorne , Robert R. Quinn , Tushar Vachharajani , Raymond Vanholder , Li Zuo , Carmel M. Hawley , Song-Hd Vascular Access Workshop Investigators , Andrea K. Viecelli , Allison Tong , Emma O'Lone , Angela Ju , Camilla S. Hanson , Benedicte Sautenet (1) , Jonathan C. Craig , Braden Manns , Martin Howell , Eric Chemla , Lai-Seong Hooi , David W. Johnson , Timmy Lee

1 SPHERE - MethodS in Patients-centered outcomes and HEalth ResEarch

Vascular access outcomes in hemodialysis are critically important for patients and clinicians, but frequently are neither patient relevant nor measured consistently in randomized trials. A Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) consensus workshop was convened to discuss the development of a core outcome measure for vascular access. 13 patients/caregivers and 46 professionals (clinicians, policy makers, industry representatives, and researchers) attended. Participants advocated for vascular access function to be a core outcome based on the broad applicability of function regardless of access type, involvement of a multidisciplinary team in achieving a functioning access, and the impact of access function on quality of life, survival, and other access-related outcomes. A core outcome measure for vascular access required demonstrable feasibility for implementation across different clinical and trial settings. Participants advocated for a practical and flexible outcome measure with a simple actionable definition. Integrating patients' values and preferences was warranted to enhance the relevance of the measure. Proposed outcome measures for function included "uninterrupted use of the access without the need for interventions" and "ability to receive prescribed dialysis," but not "access blood flow," which was deemed too expensive and unreliable. These recommendations will inform the definition and implementation of a core outcome measure for vascular access function in hemodialysis trials.

Mots clés: Clinical research; consensus; Consensus; Education; Female; hemodialysis; Humans; Male; Nephrology; nephrology research; outcome; Outcome Assessment; Health Care; outcome measure; patient-centered care; Reference Standards; Renal Dialysis; shared decision making; Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD); vascular access; Vascular Access Devices

Domaines: Sciences du Vivant [q-bio]

Charmaine E. Lok, Kevan R. Polkinghorne, Robert R. Quinn, Tushar Vachharajani, Raymond Vanholder, et al.. Report of the Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) Consensus Workshop on Establishing a Core Outcome Measure for~Hemodialysis Vascular Access. American Journal of Kidney Diseases, 2018, 71 (5), pp.690-700. ⟨10.1053/j.ajkd.2017.12.003⟩. ⟨hal-03158643⟩