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Identifying patient-important outcomes in polycystic kidney disease: An international nominal group technique study

Yeoungjee Cho1,2,3, Benedicte Sautenet4, Talia Gutman5,6

  • 1Department of Nephrology, Princess Alexandra Hospital.

Nephrology (Carlton, Vic.)
|January 22, 2019
PubMed

Insights

Patients with autosomal dominant polycystic kidney disease (ADPKD) prioritize kidney function, delayed end-stage kidney disease, and survival. These outcomes focus on maintaining normality and control, improving trial relevance for ADPKD care.

Area of Science:

  • Nephrology
  • Patient-Reported Outcomes
  • Clinical Trial Design

Background:

  • Autosomal dominant polycystic kidney disease (ADPKD) significantly increases mortality and morbidity, impacting quality of life.
  • Patient-centered outcomes are crucial for shared decision-making but are inconsistently reported in ADPKD trials.

Purpose of the Study:

  • To identify and prioritize outcomes that are important to patients with ADPKD and their caregivers.
  • To understand the underlying reasons for these outcome priorities in ADPKD research.

Main Methods:

  • A nominal group technique was employed with 154 participants (121 patients, 33 caregivers) across Australia, France, and South Korea.
  • Participants identified, ranked, and discussed outcomes, with importance scores calculated and thematic analysis conducted.

Main Results:

  • The top 10 outcomes included kidney function, end-stage kidney disease, survival, cyst size/growth, cyst pain/bleeding, blood pressure, ability to work, cerebral aneurysm/stroke, mobility/physical function, and fatigue.
  • Key themes identified were 'threatening semblance of normality,' 'inability to control,' and 'making sense of diverse risks.'

Conclusions:

  • Kidney function, delayed progression to end-stage kidney disease, and survival are paramount for ADPKD patients and caregivers.
  • Incorporating these patient-prioritized outcomes can enhance the meaning and clinical relevance of ADPKD trials.
Abstract

Keywords:
cystkidney functionoutcomespatientpolycystic kidney diseasequalitative

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