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

Attitude to Health Australia Caregivers / psychology Cost of Illness Disease Progression Evaluation Studies as Topic Female France Humans Kidney Failure, Chronic / etiology Kidney Function Tests / psychology Life Style Male Middle Aged Patient Outcome Assessment Polycystic Kidney, Autosomal Dominant / diagnosis Progression-Free Survival Quality of Life Republic of Korea

cyst kidney function outcomes patient polycystic kidney disease qualitative

Journal

Nephrology (Carlton, Vic.)

ISSN: 1440-1797

Titre abrégé: Nephrology (Carlton)

Pays: Australia

ID NLM: 9615568

Informations de publication

Date de publication:
Dec 2019

Historique:

accepted: 13 01 2019

pubmed: 22 1 2019

medline: 1 5 2020

entrez: 22 1 2019

Statut: ppublish

Résumé

Patients with autosomal dominant polycystic kidney disease (ADPKD) are at increased risk of premature mortality, morbidities and complications, which severely impair quality of life. However, patient-centered outcomes are not consistently reported in trials in ADPKD, which can limit shared decision-making. We aimed to identify outcomes important to patients and caregivers and the reasons for their priorities. Nominal group technique was adopted involving patients with ADPKD and caregivers who were purposively selected from eight centres across Australia, France and the Republic of Korea. Participants identified, ranked and discussed outcomes for trials in ADPKD. We calculated an importance score (0-1) for each outcome and conducted thematic analyses. Across 17 groups, 154 participants (121 patients, 33 caregivers) aged 19 to 78 (mean 54.5 years) identified 55 outcomes. The 10 highest ranked outcomes were: kidney function (importance score 0.36), end-stage kidney disease (0.32), survival (0.21), cyst size/growth (0.20), cyst pain/bleeding (0.18), blood pressure (0.17), ability to work (0.16), cerebral aneurysm/stroke (0.14), mobility/physical function (0.12), and fatigue (0.12). Three themes were identified: threatening semblance of normality, inability to control and making sense of diverse risks. 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.

Identifiants

DOI: 10.1111/nep.13566 PMID: 30663163

pubmed: 30663163

doi: 10.1111/nep.13566

doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

Pagination

1214-1224

Informations de copyright

Références

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