Transitioning From CKD to Kidney Failure: A Mixed-Methods Study of Patient Perspectives

Rationale & Objective The transition from chronic kidney disease (CKD) to kidney failure (KF) is life-changing. We explored the KF transition and dialysis start experiences of patients with varying degrees of prior nephrology care and preparation. Study Design Convergent parallel mixed-methods study using surveys and interviews. Setting & Participants Data were collected from December 2018 to January 2020 among adults in metropolitan Philadelphia who had recently transitioned from CKD to KF and started dialysis. Analytical Approach Participants were categorized as having had (1) some prior nephrology care and placement of an arteriovenous or peritoneal dialysis access, (2) minimal nephrology care (prior nephrology care, but no placement of a dialysis access), or (3) no prior nephrology care or placement of an access. Applied thematic analysis guided the qualitative analysis, and quantitative data were fully described. Results KF transition was tumultuous for all participants (N = 47) regardless of preparation (some prior care, n = 23 [48.9%]; minimal prior care, n = 13 [27.7%]; no prior care, n = 11 [23.4%]). Dialysis start occurred along a spectrum of urgency, with most (n = 44; 93.6%) initiating dialysis in a hospital, and nearly all (n = 46; 97.9%) were treated with in-center hemodialysis. Four additional themes emerged: (1) participants were unprepared to receive the KF diagnosis because they were unaware of the urgency of their medical situation; (2) the KF diagnosis communication environment was chaotic, but effective provider communication helped; (3) the first dialysis treatment was marked by intense apprehension and fear; and (4) participants prioritized making sense of their sudden new reality. Limitations Limited geographic representation and the exclusion of non–English-speaking participants. Conclusions Irrespective of prior preparation, participants experienced apprehension and fear during the transition from CKD to KF. Successfully addressing modifiable health system–level factors that affect this critical care transition and directly address the patient experience is needed to improve care and outcomes. Plain-Language Summary The progression from chronic kidney disease to kidney failure and dialysis is a challenging time for patients. We sought to understand the experiences of patients—those who had received prior kidney disease care and those who had not—during this transition to kidney failure and dialysis treatment. We interviewed and surveyed 47 patients in metropolitan Philadelphia within 5 months of their dialysis initiation to understand and compare their experiences. Nearly all participants described this transition as traumatic and chaotic, even those who had received prior kidney disease care. This study underscores the need for patient-centered, health system–level programs that equip patients with the knowledge, resources, and support necessary to cope with this major life change and ultimately improve patient outcomes.