title: Patient Perspectives on the Choice of Dialysis Modality: Results From the Empowering Patients on Choices for Renal Replacement Therapy (EPOCH-RRT) Study.
abstract: 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.
  
  
  METHODS
  Cross-sectional study, designed and conducted in collaboration with a multistakeholder advisory panel that included patients, caregivers, and health care professionals.
  
  
  METHODS
  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.
  
  
  METHODS
  Semistructured telephone interviews including open- and closed-ended questions.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: University of Michigan KECC, Ann Arbor, MI.
authors.forename: Claudia
authors.initials: C
authors.lastname: Dahlerus
authors.affiliation: The Center for Managing Chronic Disease, University of Michigan, Ann Arbor, MI.
authors.forename: Martha
authors.initials: M
authors.lastname: Quinn
authors.affiliation: Arbor Research Collaborative for Health, Ann Arbor, MI.
authors.forename: Emily
authors.initials: E
authors.lastname: Messersmith
authors.affiliation: The Center for Managing Chronic Disease, University of Michigan, Ann Arbor, MI.
authors.forename: Laurie
authors.initials: L
authors.lastname: Lachance
authors.affiliation: Arbor Research Collaborative for Health, Ann Arbor, MI.
authors.forename: Lalita
authors.initials: L
authors.lastname: Subramanian
authors.affiliation: University of Michigan Health System, Ann Arbor, MI; EPOCH-RRT Advisory Panel, Bingham Farms, MI.
authors.forename: Erica
authors.initials: E
authors.lastname: Perry
authors.affiliation: EPOCH-RRT Advisory Panel, Bingham Farms, MI; Greenfield Health Systems, Bingham Farms, MI.
authors.forename: Jill
authors.initials: J
authors.lastname: Cole
authors.affiliation: Arbor Research Collaborative for Health, Ann Arbor, MI.
authors.forename: Junhui
authors.initials: J
authors.lastname: Zhao
authors.affiliation: EPOCH-RRT Advisory Panel, Chapel Hill, NC.
authors.forename: Celeste
authors.initials: C
authors.lastname: Lee
authors.affiliation: EPOCH-RRT Advisory Panel, Detroit, MI.
authors.forename: Margie
authors.initials: M
authors.lastname: McCall
authors.affiliation: University of Michigan at the Michigan Institute for Clinical & Health Research, Ann Arbor, MI.
authors.forename: Leslie
authors.initials: L
authors.lastname: Paulson
authors.affiliation: Arbor Research Collaborative for Health, Ann Arbor, MI; Vanderbilt University Medical Center, Nashville, TN. Electronic address: francesca.tentori@arborresearch.org.
authors.forename: Francesca
authors.initials: F
authors.lastname: Tentori
mesh_terms: D000328:Adult; D001294:Attitude to Health; D002755:Choice Behavior; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D006435:Renal Dialysis; D051436:Renal Insufficiency, Chronic; D017582:Renal Replacement Therapy
keywords: Hemodialysis (HD); chronic kidney disease (CKD); decision aid tool development; dialysis choice; end-stage renal disease (ESRD); modality selection; patient perspectives; patient priorities; patient-centered care; peritoneal dialysis (PD); qualitative research; renal replacement therapy (RRT); shared decision making