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

Khair, Kate ORCID: https://orcid.org/0000-0003-2001-5958, Pollard, Debra ORCID: https://orcid.org/0000-0002-7797-3500, Harrison, Catherine ORCID: https://orcid.org/0000-0002-9336-5249, Hook, Susan, O'Driscoll, Mike ORCID: https://orcid.org/0000-0001-9221-6164 and Holland, Michael ORCID: https://orcid.org/0000-0002-9173-4100 (2019) HOw patients view extended half‐life products: impressions from real‐world experience (The HOPE study). Haemophilia . ISSN 1365-2516 (Published online first)

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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.

Item Type: Article
Keywords (uncontrolled): Genetics(clinical), Hematology, General Medicine
Research Areas: A. > School of Health and Education > Institute of Nursing and Midwifery
Item ID: 26855
Notes on copyright: 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; 00: 1– 7, 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.
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Depositing User: Jisc Publications Router
Date Deposited: 19 Jun 2019 07:36
Last Modified: 27 Aug 2019 12:27
URI: https://eprints.mdx.ac.uk/id/eprint/26855

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