Project Overview +

The overarching goal of this study is to strengthen our understanding of the patient and physician perspective of nephrotic syndrome, therapy, prognosis, and factors influencing disease management and to use the information generated from stakeholder engagement to inform the creation of a shared-learning online decision support tool.

Related Media +

Related Media:

Aims +

Aim 1: To explore the self-management experiences of patients and family members living with an established diagnosis of nephrotic syndrome in order to identify their current understanding of disease condition, treatment options, prognosis, strategies for self-management and factors that influence disease self-management.
Aim 2: To explore the physician perspective of disease condition, treatment options, prognosis, and factors that influence physician and patient decisions regarding nephrotic syndrome disease management.
Aim 3: To develop and test a shared-learning decision support tool to address mutual understanding by the patient (of their disease condition, treatment options, strategies for self-management) and health care team (of patientís understanding, preferences and values, and care experience)

Participants +

Adult patients and parents/guardians of minor patients with nephrotic syndrome, recruited from the three study locations, namely University of Michigan, Toronto, and University of North Carolina at Chapel Hill. Recruitment in these locations reflects the diverse nephrotic syndrome patient population with 40% African American at UNC, 30% Asian American at UMich and a wide variety of racial and ethnic backgrounds in Toronto. Furthermore these sites have established nephrology practice-based research networks on a regional and national level from which to draw community physician participation.

Intervention +

Phase I includes semi-structured interviews both individually and in focus groups.

Phase II is the creation of an online tailored decision aid. The structure of the intervention will be designed around two key milestones faced by patients newly diagnosed with nephrotic syndrome. Following clinic visits where the patient learns about their

  1. diagnosis and faces an initial treatment decision, or
  2. response to initial treatment fails and faces a decision regarding subsequent management, the patient is invited via email to complete an online patient-centered decision support session.

A tailored summary of the information covered during these sessions regarding the patientís decision needs and decision outcomes are shared (via a secure administrative interface) with a designated member of the health care team. This information is used to help guide phone follow-up with the patient to address any unmet decision needs and discuss their decision outcomes.


10/11/2012 - 12/31/2014


Patient-Centered Outcomes Research Institute

Principal Investigator:

Debbie S. Gipson, MD, MS


Lawrence C. An, MD