American journal of kidney diseases : the official journal of the National Kidney Foundation · 2020
Core Outcome Domains for Trials in Autosomal Dominant Polycystic Kidney Disease: An International Delphi Survey.
СтатьяПоддержка исследования: вне правительства СШАНазвание и аннотация: Перевод в очереди
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Cho Yeoungjee, Rangan Gopala, Logeman Charlotte, Ryu Hyunjin, Sautenet Benedicte, Perrone Ronald D, Nadeau-Fredette Annie-Claire, Mustafa Reem A, Htay Htay, Chonchol Michel, Harris Tess, Gutman Talia, Craig Jonathan C, Ong Albert C M, Chapman Arlene, Ahn Curie, Coolican Helen, Kao Juliana Tze-Wah, Gansevoort Ron T, Torres Vicente, Pei York, Johnson David W, Viecelli Andrea K, Teixeira-Pinto Armando, Howell Martin, Ju Angela, Manera Karine E, Tong Allison
Аннотация
RATIONALE & OBJECTIVE: Outcomes reported in trials involving patients with autosomal dominant polycystic kidney disease (ADPKD) are heterogeneous and rarely include patient-reported outcomes. We aimed to identify critically important consensus-based core outcome domains to be reported in trials in ADPKD.
STUDY DESIGN: An international 2-round online Delphi survey was conducted in English, French, and Korean languages.
SETTING & PARTICIPANTS: Patients/caregivers and health professionals completed a 9-point Likert scale (7-9 indicating critical importance) and a Best-Worst Scale.
ANALYTICAL APPROACH: The absolute and relative importance of outcomes were assessed. Comments were analyzed thematically.
RESULTS: 1,014 participants (603 [60%] patients/caregivers, 411 [40%] health professionals) from 56 countries completed round 1, and 713 (70%) completed round 2. The prioritized outcomes were kidney function (importance score, 8.6), end-stage kidney disease (8.6), death (7.9), blood pressure (7.9), kidney cyst size/growth (7.8), and cerebral aneurysm (7.7). Kidney cyst-related pain was the highest rated patient-reported outcome by both stakeholder groups. Seven themes explained the prioritization of outcomes: protecting life and health, directly encountering life-threatening and debilitating consequences, specificity to ADPKD, optimizing and extending quality of life, hidden suffering, destroying self-confidence, and lost opportunities.
LIMITATIONS: Study design precluded involvement from those without access to internet or limited computer literacy.
CONCLUSIONS: Kidney function, end-stage kidney disease, and death were the most important outcomes to patients, caregivers, and health professionals. Kidney cyst-related pain was the highest rated patient-reported outcome. Consistent reporting of these top prioritized outcomes may strengthen the value of trials in ADPKD for decision making.
STUDY DESIGN: An international 2-round online Delphi survey was conducted in English, French, and Korean languages.
SETTING & PARTICIPANTS: Patients/caregivers and health professionals completed a 9-point Likert scale (7-9 indicating critical importance) and a Best-Worst Scale.
ANALYTICAL APPROACH: The absolute and relative importance of outcomes were assessed. Comments were analyzed thematically.
RESULTS: 1,014 participants (603 [60%] patients/caregivers, 411 [40%] health professionals) from 56 countries completed round 1, and 713 (70%) completed round 2. The prioritized outcomes were kidney function (importance score, 8.6), end-stage kidney disease (8.6), death (7.9), blood pressure (7.9), kidney cyst size/growth (7.8), and cerebral aneurysm (7.7). Kidney cyst-related pain was the highest rated patient-reported outcome by both stakeholder groups. Seven themes explained the prioritization of outcomes: protecting life and health, directly encountering life-threatening and debilitating consequences, specificity to ADPKD, optimizing and extending quality of life, hidden suffering, destroying self-confidence, and lost opportunities.
LIMITATIONS: Study design precluded involvement from those without access to internet or limited computer literacy.
CONCLUSIONS: Kidney function, end-stage kidney disease, and death were the most important outcomes to patients, caregivers, and health professionals. Kidney cyst-related pain was the highest rated patient-reported outcome. Consistent reporting of these top prioritized outcomes may strengthen the value of trials in ADPKD for decision making.
Предметные рубрики MeSH
AdolescentAdultAfricaAgedAsiaCaregiversChildConsensusDelphi TechniqueFemaleHealth PersonnelHumansIntracranial AneurysmKidney Failure, ChronicMaleMiddle AgedPainPatient Reported Outcome MeasuresPatientsPolycystic Kidney, Autosomal DominantQualitative ResearchQuality of LifeSelf ConceptSocioeconomic FactorsStress, PsychologicalYoung Adult