RESUMO
BACKGROUND: Little is known about factors that are important to patients with advanced kidney disease and their perspectives at the time they choose a dialysis modality. EPOCH-RRT, a study supported in part by the Patient-Centered Outcomes Research Institute (PCORI), was designed to assist patients with this choice by identifying such factors and effectively provide relevant information. STUDY DESIGN: Cross-sectional study, designed and conducted in collaboration with a multistakeholder advisory panel that included patients, caregivers, and health care professionals. SETTING & PARTICIPANTS: 180 patients with advanced chronic kidney disease (CKD; estimated glomerular filtration rate < 25mL/min/1.73m2), either non-dialysis-dependent (NDD-CKD; n=65) or on dialysis therapy (hemodialysis [HD], n=77; or peritoneal dialysis, n=38), recruited across the United States through social media and in-person contacts. METHODOLOGY: Semistructured telephone interviews including open- and closed-ended questions. ANALYTICAL APPROACH: Mixed methods, integrating quantitative and qualitative approaches; themes identified through content analysis of interview transcripts by 2 independent coders. RESULTS: Themes most often reported as important were keeping as much independence as possible, quality and quantity of life, and flexibility in daily schedule. Other factors (eg, concern about the way they look) differed across patient subgroups based on age, sex, and NDD-CKD/dialysis modality. Among patients who had initiated dialysis therapy, almost half (47%) the HD patients believed that the decision to be treated by HD had largely not been their choice; this was only reported by 3% of peritoneal dialysis patients. LIMITATIONS: Recruitment through social media and willingness to participate in lengthy telephone interviews resulted in a select sample that may not be representative of the broader advanced CKD population; therefore, generalizability of findings cannot be determined. CONCLUSIONS: Incorporation of patient priorities in care improves health outcomes. Given the perceived limited role in the choice of dialysis treatment, our findings support the need for interventions to improve shared decision making on dialysis treatment options, targeting both patients and clinicians.
