Development of a patient-reported outcome questionnaire for aplastic anemia and paroxysmal nocturnal hemoglobinuria (PRO-AA/PNH).

Kimmo WeisshaarHannah EwaldJörg HalterSabine GerullSandra SchönfeldYuliya SenftMaria MartinezAnne Leuppi-TaegtmeyerNina KhannaBirgit MaierAntonio RisitanoRegis Peffault de LatourAndre TichelliJakob PasswegBeatrice Drexler

Published in: Orphanet journal of rare diseases (2020)

The development of symptom self-reporting questionnaires for AA and PNH was feasible and the disease-specific PRO questionnaires can now be validated within a web-based workflow in a subsequent feasibility study.

Keyphrases

patient reported outcomes
psychometric properties
anti inflammatory
blood pressure
atrial fibrillation
chronic kidney disease
obstructive sleep apnea
allogeneic hematopoietic stem cell transplantation
patient reported
physical activity
sleep apnea
depressive symptoms
sleep quality
electronic health record