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Reliability and validity of patient‐reported outcome instruments in US adults with hemophilia B and caregivers in the B‐HERO‐S study
Author(s) -
Buckner Tyler W.,
Sidonio Robert,
Guelcher Christine,
Kessler Craig M.,
Witkop Michelle,
Clark David,
Owens Wendy,
Fridman Moshe,
Iyer Neeraj N.,
Cooper David L.
Publication year - 2018
Publication title -
european journal of haematology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.904
H-Index - 84
eISSN - 1600-0609
pISSN - 0902-4441
DOI - 10.1111/ejh.13168
Subject(s) - cronbach's alpha , construct validity , medicine , clinical psychology , reliability (semiconductor) , quality of life (healthcare) , population , anxiety , physical therapy , psychology , psychometrics , psychiatry , power (physics) , physics , nursing , environmental health , quantum mechanics
Objective To assess the reliability and validity of six patient‐reported outcomes (PRO) instruments for evaluating health‐related quality of life in adults with mild‐severe hemophilia B and caregivers of children with hemophilia B, including affected women/girls. Methods Adults with hemophilia B and caregivers completed separate online surveys containing several PRO instruments, which were administered to adult participants only (EQ‐5D‐5L, Brief Pain Inventory v2 Short Form, Hemophilia Activities List, and International Physical Activities Questionnaire), both adults and caregivers (Patient Health Questionnaire [PHQ‐9]), or caregivers only (Generalized Anxiety Disorder 7‐Item [GAD‐7] scale). Construct validity and item‐total correlation were assessed using Pearson product‐moment correlation, internal consistency was assessed using Cronbach’s alpha coefficient, and known‐group validity was assessed by comparisons to self‐reported characteristics based on the Kruskal‐Wallis test. Results Patient‐reported outcomes instruments generally showed satisfactory reliability for adults (n = 299) and caregivers (n = 150). In adults, PRO instruments generally showed high construct validity. Most PRO instruments showed expected significant differences among known groups for adults and caregivers. PHQ‐9 and GAD‐7 did not show significant differences among caregiver age groups. Conclusions Patient‐reported outcomes instruments administered in B‐HERO‐S demonstrated reliability and validity in the broader population of adults with hemophilia B and caregivers when including all severities and genders.