Open Access<p>Assessing Preferences for Rare Disease Treatment: Qualitative Development of the Paroxysmal Nocturnal Hemoglobinuria Patient Preference Questionnaire (PNH-PPQ©)</p>
Author(s) -
Karen Kaiser,
Susan Yount,
Christa E. Martens,
Kimberly Webster,
Sara Shaunfield,
Amy Sparling,
John Devin Peipert,
David Cella,
Scott T. Rottinghaus,
B.M.K. Donato,
Richard A. Wells,
Ioannis Tomazos
Publication year - 2020
Publication title -
patient preference and adherence
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.885
H-Index - 48
ISSN - 1177-889X
DOI - 10.2147/ppa.s233830
Subject(s) - medicine , patient reported outcome , paroxysmal nocturnal hemoglobinuria , eculizumab , patient experience , family medicine , debriefing , disease , pediatrics , quality of life (healthcare) , health care , nursing , immunology , antibody , complement system , economics , economic growth , medical education
To develop a patient preference questionnaire (PPQ) assessing eculizumab and ravulizumab treatment for paroxysmal nocturnal hemoglobinuria (PNH).