Presentation (CTI)

OBJECTIVES: The Patient Experience Mapping Toolbox (PEMT) is a novel systems thinking model that can assist health economics and outcomes researchers (HEOR) in understanding patients’ lived experiences with Chronic Kidney Disease (CKD) from before they receive a diagnosis to current management of their condition. The PEMT asks what factors are important to CKD patients when generating informed decisions about their care, identifies gaps in access, and compares the quality of care between two cohorts, those with diabetes-related CKD (Cohort 1) and those with a rare genetic form of CKD (Cohort 2) such as IgA Nephropathy and Complement 3 Glomerulopathy.
METHODS: From October 2024 to March 2025, 66 interviews across the United States (Cohort 1; n=35; Cohort 2; n=31) were conducted with patients living with late-stage or end-stage CKD. Each interview was one hour and conducted via Zoom. Transcripts were independently coded and analyzed by employing an inductive qualitative analysis process via NVivo 15.
RESULTS: Three themes of importance emerged from patient provided information (PPI): 1) Patient knowledge gaps concerning early-stage detection and mitigation 2) Comparison and cost of dialysis and other treatment options, and 3) Insurance coverage and approval time for necessary medications. Cohort 1 was more likely to mention concerns on total lifestyle changes when on dialysis, contributing to negative experiences, while cohort 2 often mentioned dissatisfaction in approval time for novel therapies.
CONCLUSIONS: The societal costs of CKD treatment are high; these themes expose key intervention points to improve outcomes: 1) Enhance resource efficiency to provide information on preventative care at earlier stages and 2) Improve future research development by highlighting social drivers of health among patients with CKD. The findings from this phenomenological study include critical patient desired outcomes and provide avenues for HEOR to incorporate patient perspectives in their models.