Health-related quality of life in paediatric haemophilia B patients treated with rIX-FP.

ABSTRACT:

Introduction

Frequent infusions and bleeds can impact on the health-related quality of life (HRQoL) of paediatric haemophilia B patients. rIX-FP (IDELVION^® ) is a fusion protein linking recombinant factor IX with recombinant albumin, and is associated with low bleeding rates with a weekly regimen, which could improve HRQoL.

Aims

To measure the effect of rIX-FP prophylaxis on the HRQoL of paediatric patients and treatment satisfaction in their caregivers using the Haemo-QoL and Hemo-SAT_P questionnaires, respectively.

Methods

At baseline and end-of-study (EOS), patients 4-11 years old participating in the PROLONG-9FP program answered the Haemo-QoL questionnaire and gave information on their socio-demographic data and physical activity. Caregivers c

SUBMITTER: von Mackensen S 

PROVIDER: S-EPMC6916427 | biostudies-literature | 2019 Jan

REPOSITORIES: biostudies-literature