Elsevier

Kidney International

Volume 99, Issue 1, January 2021, Pages 198-207
Kidney International

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

https://doi.org/10.1016/j.kint.2020.07.024Get rights and content

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.

Section snippets

Participants and characteristics

All 30 (10 women and 20 men) approached agreed to participate. Participants had a mean age of 51.7 ± 10.6 years and a mean Charlson Comorbidity Index score of 5.5 ± 1.8, and all (100%) participants preferred that the interview be conducted in Spanish. The majority (83%) had a “less than high school education” and an income of ≤$15,000 (93%) and had been on dialysis for a mean of 47 ± 45 months. The second interview took place a mean of 5.0 ± 1.7 months after transition (Table 1). Two

Discussion

An increasing number of US states are contemplating a change to a more equitable, efficient, and humane policy to allow undocumented immigrants to access scheduled dialysis. In the state of Colorado, where this changed occurred, undocumented immigrants experienced an improvement (ranging from 13% to 166%) in all 5 quality of life subscales and an improvement (ranging from 57% to 100%) in 7 symptoms. Trust in physicians and satisfaction with care were largely the same. Patients had apprehension

Study design

We conducted a pre-post intervention (before and after transition from emergency to scheduled hemodialysis), mixed methods (questionnaires and qualitative semi-structured interviews) study. Consolidated Criteria for Reporting Qualitative Research was used to report this study (Supplementary Table S2).16 The multi-institutional review boards of the University of Colorado Denver approved this study.

Participants and setting

Eligible participants were English- or Spanish-speaking undocumented immigrant adults (≥18 years

Disclosure

All the authors declared no competing interests.

Acknowledgments

This study was made possible by an internal grant from the University of Colorado School of Medicine and the National Institute of Diabetes and Digestive and Kidney Diseases (K23DK117018). The funders of this study had no role in study design; collection, analysis, and interpretation of data; manuscript writing; or decision to submit the manuscript for publication.

Author Contributions

LC and NRP designed the study. CC carried out the interviews. AT, LC, and AC analyzed the data. LC, NRP, AT, CC, and AC made the

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