The BC ADPKD Network: A Comprehensive Provincial Approach to Support Specialized and Locally Delivered Multidisciplinary ADPKD Care

Abstract

Purpose: With evolving evidence around the progression, assessment, and management of autosomal dominant polycystic kidney disease (ADPKD), care of the disease has become increasingly complex. Needs assessments in British Columbia (BC) described variability in knowledge and comfort with incorporating these new aspects of ADPKD care into clinical practice. Undercapture of early-stage ADPKD patients in existing renal databases was also identified as an unmet need. Sources of Information: A multidisciplinary group of clinicians and patient partners with interest and expertise in ADPKD and/or multidisciplinary kidney care informed the project work. An existing provincial renal database was used to support the provincial ADPKD registry. Methods: A formalized, comprehensive provincial ADPKD Network was created within the existing infrastructure of multidisciplinary kidney clinics (MDCs) in BC. The Network is coordinated provincially and implemented locally. It incorporates robust data collection, education, creation, and dissemination of dedicated clinical tools; collaboration between clinics and clinicians across the province; and ongoing evaluation and continuous quality improvement. Key Findings: Over the 5 years since its inception, the BC ADPKD Network has enabled increased and earlier identification of British Columbians living with ADPKD and a shift in practice toward increased and earlier enrollment of ADPKD patients into MDCs. A host of tailored ADPKD clinical tools have been created and implemented in all MDCs across the province to support existing MDC staff in the delivery of more standardized and specialized ADPKD care. A collaborative provincial clinician network founded on Local Clinical Champions has been established to support ongoing experience sharing between clinics. An evaluation framework has been established to evaluate outcomes and enable ongoing refinement of the Network. Limitations: The provincial ADPKD registry is undergoing enhancements to enable more comprehensive capture of APDKD-specific information such as total kidney volume and genetic results, but at present, this remains a limitation. It remains to be seen whether the activities of the ADPKD Network will improve long-term clinical outcomes and care experiences of patients living with ADPKD, and a long-term sustainability assessment of this model of care will be required. Implications: The structure, tools, and coordinated and collaborative clinician network established through this comprehensive provincial ADPKD Network may be valuable in addressing the variability and gaps in existing ADPKD care while allowing patients and families across BC to receive enhanced care locally, in their usual kidney care environments.