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.

Keywordsextended half-life factors; haemophilia; patient expectation; patient experience; qualitative research
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
File Access Level
Open
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
PubMed ID31365176
Web of Science identifierWOS:000481066900001
LanguageEnglish
Permalink -

https://repository.mdx.ac.uk/item/88562

Download files


Accepted author manuscript
Khair_et_al-2019-HOPE_14.8.19.pdf
File access level: Open

  • 45
    total views
  • 13
    total downloads
  • 0
    views this month
  • 0
    downloads this month

Export as

Related outputs

Hungry for change: the experiences of people with PKU, and their caregivers, when eating out
Poole, G., Pinto, A., Evans, S., Ford, S., O'Driscoll, M., Buckley, S., Ashmore, C., Daly, A. and MacDonald, A. 2022. Hungry for change: the experiences of people with PKU, and their caregivers, when eating out. Nutrients. 14 (3). https://doi.org/10.3390/nu14030626
Evaluation of an online screen-based simulation initiative in the adult child midwifery department
O'Driscoll, M. and Traynor, M. 2021. Evaluation of an online screen-based simulation initiative in the adult child midwifery department. Middlesex University.
Provision and supervision of food and protein substitute in school for children with PKU: parent experiences
Jones, H., Pinto, A., Evans, S., Ford, S., O'Driscoll, M., Buckley, S., Ashmore, C., Daly, A. and MacDonald, A. 2021. Provision and supervision of food and protein substitute in school for children with PKU: parent experiences. Nutrients. 13 (11), pp. 1-13. https://doi.org/10.3390/nu13113863
Exploring factors having an impact on attitudes and motivations towards volunteering in the undergraduate nursing student population − A comparative study of the UK and Ghana
Dyson, S., Korsah, K., Liu, L., O'Driscoll, M. and van den Akker, O. 2021. Exploring factors having an impact on attitudes and motivations towards volunteering in the undergraduate nursing student population − A comparative study of the UK and Ghana. Nurse Education in Practice. 53, pp. 1-10. https://doi.org/10.1016/j.nepr.2021.103050
Accidental consumption of aspartame in phenylketonuria: patient experiences
Newbould, E., Pinto, A., Evans, S., Ford, S., O'Driscoll, M., Ashmore, C., Daly, A. and MacDonald, A. 2021. Accidental consumption of aspartame in phenylketonuria: patient experiences. Nutrients. 13 (2), pp. 1-13. https://doi.org/10.3390/nu13020707
Prescribing issues experienced by people living with phenylketonuria in the UK
Ford, S., O'Driscoll, M. and MacDonald, A. 2019. Prescribing issues experienced by people living with phenylketonuria in the UK. Molecular Genetics and Metabolism Reports. 21, pp. 1-7. https://doi.org/10.1016/j.ymgmr.2019.100527
The extent, variability and attitudes towards volunteering among nursing students: What are the implications for pedagogy in nurse education?
O'Driscoll, M., Dyson, S., van den Akker, O. and Mehta, N. 2017. The extent, variability and attitudes towards volunteering among nursing students: What are the implications for pedagogy in nurse education? National Council of Voluntary Organisations Conference 2017. Nottingham, UK 07 - 08 Sep 2017
The extent, variability and attitudes towards volunteering among nursing students: Implications for pedagogy in nurse education
O'Driscoll, M., Dyson, S., Liu, L., van den Akker, O. and Mehta, N. 2017. The extent, variability and attitudes towards volunteering among nursing students: Implications for pedagogy in nurse education. 11th Annual International Conference on Sociology. Athens, Greece 01 - 04 May 2017
The UK Health and Social Care Act (2012) and new public management – more of the wrong medicine?
O'Driscoll, M. 2018. The UK Health and Social Care Act (2012) and new public management – more of the wrong medicine? ATINER: 4th Annual International Conference on Public Health. Athens, Greece 24 - 28 Jun 2018
Do governing body and CSU nurses on clinical commissioning groups really lead a nursing agenda? Findings from a 2015 Survey of the Commissioning Nurse Leaders’ Network Membership
O'Driscoll, M., Allan, H., Lee, G., Savage, J., Tapson, C. and Dixon, R. 2018. Do governing body and CSU nurses on clinical commissioning groups really lead a nursing agenda? Findings from a 2015 Survey of the Commissioning Nurse Leaders’ Network Membership. Journal of Nursing Management. 26 (3), pp. 245-255. https://doi.org/10.1111/jonm.12485
Compassion in Practice – evaluating the awareness, involvement and perceived impact of a national nursing and midwifery strategy amongst health care professionals in NHS Trusts in England
O'Driscoll, M., Allan, H., Liu, L., Corbett, K. and Serrant, L. 2018. Compassion in Practice – evaluating the awareness, involvement and perceived impact of a national nursing and midwifery strategy amongst health care professionals in NHS Trusts in England. Journal of Clinical Nursing. 27 (5-6), pp. e1097-e1109. https://doi.org/10.1111/jocn.14176
Reproductive experience of women living with phenylketonuria
Ford, S., O'Driscoll, M. and MacDonald, A. 2018. Reproductive experience of women living with phenylketonuria. Molecular Genetics and Metabolism Reports. 17, pp. 64-68. https://doi.org/10.1016/j.ymgmr.2018.09.008
Living with Phenylketonuria: lessons from the PKU community
Ford, S., O'Driscoll, M. and McDonald, A. 2018. Living with Phenylketonuria: lessons from the PKU community. Molecular Genetics and Metabolism Reports. 17, pp. 57-63. https://doi.org/10.1016/j.ymgmr.2018.10.002
The extent, variability, and attitudes towards volunteering among undergraduate nursing students: implications for pedagogy in nurse education
Dyson, S., Liu, L., van den Akker, O. and O'Driscoll, M. 2017. The extent, variability, and attitudes towards volunteering among undergraduate nursing students: implications for pedagogy in nurse education. Nurse Education in Practice. 23, pp. 15-22. https://doi.org/10.1016/j.nepr.2017.01.004
A report of a North Central and East London-wide evaluation of the CEPN multi-professional/collaborative learning groups
O'Driscoll, M., Traynor, M. and Dyson, S. 2017. A report of a North Central and East London-wide evaluation of the CEPN multi-professional/collaborative learning groups. Presented to Health Education England.
Nurses’ experiences of clinical commissioning group boards
Allan, H., O'Driscoll, M., Savage, J., Lee, G. and Dixon, R. 2016. Nurses’ experiences of clinical commissioning group boards. Nursing Standard. 30 (42), pp. 46-55. https://doi.org/10.7748/ns.2016.e9633
Are senior nurses on clinical commissioning groups in England inadvertently supporting the devaluation of their profession?: A critical integrative review of the literature
Allan, H., Dixon, R., Lee, G., O'Driscoll, M., Savage, J. and Tapson, C. 2016. Are senior nurses on clinical commissioning groups in England inadvertently supporting the devaluation of their profession?: A critical integrative review of the literature. Nursing Inquiry. 23 (2), pp. 178-187. https://doi.org/10.1111/nin.12129
Survey of the Commissioning Nurse Leaders’ Network membership 2015: summary of results
Allan, H. and O'Driscoll, M. 2016. Survey of the Commissioning Nurse Leaders’ Network membership 2015: summary of results. online Middlesex University.
An evaluation of the impact of ‘Compassion in practice: nursing, midwifery and care staff - our vision and strategy’ on staff experience in NHS Trusts in England.
Allan, H., O'Driscoll, M., Liu, L., Corbett, K. and Department of Adult, Child and Midwifery, School of Health and Education, Middlesex University 2015. An evaluation of the impact of ‘Compassion in practice: nursing, midwifery and care staff - our vision and strategy’ on staff experience in NHS Trusts in England. School of Health and Education, Middlesex University.