title: Provider perspectives on treatment decision-making in nephrotic syndrome.
abstract: BACKGROUND
  Managing patients with nephrotic syndrome (NS) remains difficult for the practicing nephrologist. This often young patient population is faced with a debilitating, relapsing and remitting disease with non-specific treatment options that are often poorly tolerated. Clinicians managing these complex patients must attempt to apply disease-specific evidence while considering the individual patient's clinical and personal situation.
  
  
  METHODS
  We conducted qualitative interviews to ascertain the provider perspectives of NS, treatment options and factors that influence recommendations for disease management, and administered a survey to assess both facilitators and barriers to the implementation of the Kidney Disease: Improving Global Outcomes (KDIGO) guidelines.
  
  
  RESULTS
  When making treatment recommendations, providers considered characteristics of various treatments such as efficacy, side effects and evaluation of risk versus benefit, taking into account how the specific treatment fit with the individual patient. Time constraints and the complexity of explaining the intricacies of NS were noted as significant barriers to care. Although the availability of guidelines was deemed a facilitator to care, the value of the KDIGO guidelines was limited by the perception of poor quality of evidence.
  
  
  CONCLUSIONS
  The complexity of NS and the scarcity of robust evidence to support treatment recommendations are common challenges reported by nephrologists. Future development and use of shared learning platforms may support the integration of best available evidence, patient/family preferences and exchange of information at a pace that is unconstrained by the outpatient clinic schedule.
authors.affiliation: Division of Nephrology, Department of Medicine, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, ON, Canada.
authors.forename: Michelle A
authors.initials: MA
authors.lastname: Hladunewich
authors.affiliation: Daphne Cockwell School of Nursing, Ryerson University, Toronto, ON, Canada.
authors.forename: Heather
authors.initials: H
authors.lastname: Beanlands
authors.affiliation: Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.
authors.forename: Emily
authors.initials: E
authors.lastname: Herreshoff
authors.affiliation: Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.
authors.forename: Jonathan P
authors.initials: JP
authors.lastname: Troost
authors.affiliation: Daphne Cockwell School of Nursing, Ryerson University, Toronto, ON, Canada.
authors.forename: Maria
authors.initials: M
authors.lastname: Maione
authors.affiliation: Department of Pediatrics, New York University, New York, NY, USA.
authors.forename: Howard
authors.initials: H
authors.lastname: Trachtman
authors.affiliation: Division of Nephrology, Department of Medicine, University of North Carolina Kidney Center, Chapel Hill, NC, USA.
authors.forename: Caroline
authors.initials: C
authors.lastname: Poulton
authors.affiliation: Division of Nephrology, Department of Medicine, University of North Carolina Kidney Center, Chapel Hill, NC, USA.
authors.forename: Patrick
authors.initials: P
authors.lastname: Nachman
authors.affiliation: Patient Advocate, Ann Arbor, MI, USA.
authors.forename: Mary Margaret
authors.initials: MM
authors.lastname: Modes
authors.affiliation: Nephcure Kidney International, King of Prussia, PA, USA.
authors.forename: Marilyn
authors.initials: M
authors.lastname: Hailperin
authors.affiliation: Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.
authors.forename: Renee
authors.initials: R
authors.lastname: Pitter
authors.affiliation: Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.
authors.forename: Debbie S
authors.initials: DS
authors.lastname: Gipson
mesh_terms: D000328:Adult; D000368:Aged; D001291:Attitude of Health Personnel; D003657:Decision Making; D019468:Disease Management; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009404:Nephrotic Syndrome / Q000628:therapy*; D057240:Patient Preference; D010465:Perception; D017410:Practice Guidelines as Topic / Q000592:standards*; D010818:Practice Patterns, Physicians' / Q000592:standards*; D011795:Surveys and Questionnaires
keywords: KDIGO guidelines; learning needs; nephrotic syndrome; qualitative approaches; treatment decision-making