Patient-reported outcomes and experiences in the transition of undocumented patients from emergency to scheduled hemodialysis

Abstract

Undocumented immigrants with kidney failure can only access dialysis after presenting critically ill to an emergency department in most states within the United States. How access to scheduled dialysis might improve or harm patient experience is currently unknown. To clarify this, we assessed patient reported outcomes and experiences of undocumented patients who transitioned from emergency to scheduled dialysis. Pre-post intervention interviews were conducted using a mixed-methods study (questionnaires and interviews) in a Colorado hospital. Measures included the Kidney Disease Quality of Life Short Form-36 (KDQOL SF-36), Edmonton Symptom Assessment System, Trust in Physician Scale, and CHOICE Satisfaction Scale. Interviews were evaluated using thematic analysis. Thirty patients participated, and 26 completed the post-transition interview (two participants died, two did not transition to scheduled dialysis). Following transition, patients significantly improved on all five KDQOL SF-36 subscales including 116% for burden of kidney disease, 42% for kidney disease effects, 27% for symptoms/problems, 23% for physical and 13% for mental health composite. Patients reported significant improvement in seven symptoms consisting of 100% for nausea, 57% for pain, 94% for appetite and shortness of breath, 87% for anxiety, 86% for depression, 65% for tiredness, and 60% for drowsiness. Trust and satisfaction with care were unchanged. Five identified themes corroborated patient-reported outcomes but indicated continuing challenges associated with anxiety about navigating changes in care, increased burden on family and employers, relief in receiving consistent care, immediate and remarkable health gains, and restoring hope and humanity. Thus, providing healthcare access to standard dialysis for undocumented immigrants improved quality of life and mitigated debilitating symptoms but brought new challenges in healthcare navigation as well as family burden and work.

Keywords: access to care; dialysis; emergency hemodialysis; kidney failure; quality of life.