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

Yeoungjee ChoBenedicte SautenetTalia GutmanGopala RanganJonathan C CraigAlbert C OngArlene ChapmanCurie AhnHelen CoolicanJuliana T-W KaoRon GansevoortRonald D PerroneTess HarrisVicente TorresYork PeiPeter G KerrJessica RyanDavid W JohnsonAndrea K ViecelliClaire GenesteHyunsuk KimYaerim KimYun Kyu OhArmando Teixeira-PintoCharlotte LogemanMartin HowellAngela JuKarine E ManeraAllison Tong

Published in: Nephrology (Carlton, Vic.) (2019)

For patients with ADPKD and their caregivers, kidney function, delayed progression to end-stage kidney disease and survival were the highest priorities, and were focused on achieving normality, and maintaining control over health and lifestyle. Implementing these patient-important outcomes may improve the meaning and relevance of trials to inform clinical care in ADPKD.

Keyphrases

polycystic kidney disease
healthcare
palliative care
case report
public health
quality improvement
mental health
physical activity
cardiovascular disease
weight loss
health information
climate change
skeletal muscle
human health