HOw patients view extended half‐life products: impressions from real‐world experience (The HOPE study)

Article


Khair, K., Pollard, D., Harrison, C., Hook, S., O'Driscoll, M. and Holland, M. 2019. HOw patients view extended half‐life products: impressions from real‐world experience (The HOPE study). Haemophilia. 25 (5), pp. 814-820. https://doi.org/10.1111/hae.13803
TypeArticle
TitleHOw patients view extended half‐life products: impressions from real‐world experience (The HOPE study)
AuthorsKhair, K., Pollard, D., Harrison, C., Hook, S., O'Driscoll, M. and Holland, M.
Abstract

Introduction
Extended half‐life (EHL) clotting factors have been shown to offer people with haemophilia (PwH) protection from bleeding with fewer infusions, which might reduce treatment burden.
Aim
The HOw Patients view Extended half‐life products (HOPE) study aimed to explore, understand and describe patient expectations around the prophylactic use of EHL products and to establish whether these expectations were met through individual follow‐up analysis.
Methods
The HOPE study was a prospective, qualitative cohort study conducted among PwH who had switched to Fc fusion protein EHL products in routine clinical care and who had not been recruited to clinical trials of these products. Semi‐structured audio‐recorded interviews were undertaken over two time points; transcripts were analysed to systematically generate theory from data that contains both inductive and deductive thinking.
Results
Forty‐three interviews were conducted with 25 participants. Most participants were positive about EHL treatment and intended to continue using them. Reduced frequency of infusions meant lives were less disrupted or dominated by haemophilia, and there was less perceived stress on overused veins. For those PwH who did not reduce infusion frequency, there were other perceived benefits from EHLs with respect to greater protection with higher trough levels and fewer bleeds.
Conclusion
Patients switching to EHL treatments believe these products will result in fewer infusions and less disruption of everyday life, leaving them feeling more protected with fewer bleeds and increased activity levels, as well as enhanced well‐being and mental health. Understanding patient expectation and experience around using products adds real‐world data to clinical trial experience.

KeywordsGenetics(clinical), Hematology, General Medicine
PublisherWiley
JournalHaemophilia
ISSN1351-8216
Electronic1365-2516
Publication dates
Online10 Jun 2019
Print26 Sep 2019
Publication process dates
Deposited19 Jun 2019
Accepted20 May 2019
Output statusPublished
Accepted author manuscript
Copyright Statement

This is the peer reviewed version of the following article: Khair, K, Pollard, D, Harrison, C, Hook, S, O’Driscoll, M, Holland, M. HOw Patients view Extended half‐life products: Impressions from real‐world experience (The HOPE study). Haemophilia. 2019; 25: 814– 820, which has been published in final form at https://doi.org/10.1111/hae.13803. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.

Digital Object Identifier (DOI)https://doi.org/10.1111/hae.13803
LanguageEnglish
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