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The patient gene therapy journey: Findings from qualitative interviews with trial participants at one UK haemophilia centre

The patient gene therapy journey: Findings from qualitative interviews with trial participants at... AbstractIntroductionGene therapy for haemophilia is in late-stage clinical development and has the potential to become a therapeutic option in clinical practice.AimsTo enhance the understanding of the perspectives of people with haemophilia around gene therapy, and to highlight their concerns about and motivations for having gene therapy.MethodStructured, qualitative interviews were conducted and recorded with six people who had received an investigational gene therapy product. The recordings were transcribed and thematically analysed.ResultsMost of those interviewed were under the age of 40, and the mean time out from their gene therapy infusion was 10 months. Adverse events were the main concerns pre-infusion, and impact on quality of life was the main motivating factor for choosing to go ahead. Pre-infusion, the treating centre and the health care professionals working there were the main source of information regarding gene therapy; only two participants looked elsewhere for information to support their decision. None of the respondents expressed concerns about the infusion day itself, and all found the infusion to be simple or uneventful. Post-infusion, four found the frequency of follow-up appointments difficult, with time and travel the main issues.ConclusionAlthough participants' perspectives on gene therapy were generally positive, there remains a need for education and support. Nurses will play an important role in the delivery of gene therapy for haemophilia, but all staff within the haemophilia treatment centre should be armed with the knowledge and confidence to answer questions about gene therapy. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png The Journal of Haemophilia Practice de Gruyter

The patient gene therapy journey: Findings from qualitative interviews with trial participants at one UK haemophilia centre

Aradom, Elsa; Gomez, Keith
The Journal of Haemophilia Practice , Volume 8 (1): 13 – Jan 1, 2021
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Publisher
de Gruyter
Copyright
© 2021 Elsa Aradom et al., published by Sciendo
eISSN
2055-3390
DOI
10.17225/jhp00174
Publisher site
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Abstract

AbstractIntroductionGene therapy for haemophilia is in late-stage clinical development and has the potential to become a therapeutic option in clinical practice.AimsTo enhance the understanding of the perspectives of people with haemophilia around gene therapy, and to highlight their concerns about and motivations for having gene therapy.MethodStructured, qualitative interviews were conducted and recorded with six people who had received an investigational gene therapy product. The recordings were transcribed and thematically analysed.ResultsMost of those interviewed were under the age of 40, and the mean time out from their gene therapy infusion was 10 months. Adverse events were the main concerns pre-infusion, and impact on quality of life was the main motivating factor for choosing to go ahead. Pre-infusion, the treating centre and the health care professionals working there were the main source of information regarding gene therapy; only two participants looked elsewhere for information to support their decision. None of the respondents expressed concerns about the infusion day itself, and all found the infusion to be simple or uneventful. Post-infusion, four found the frequency of follow-up appointments difficult, with time and travel the main issues.ConclusionAlthough participants' perspectives on gene therapy were generally positive, there remains a need for education and support. Nurses will play an important role in the delivery of gene therapy for haemophilia, but all staff within the haemophilia treatment centre should be armed with the knowledge and confidence to answer questions about gene therapy.

Journal

The Journal of Haemophilia Practice – de Gruyter

Published: Jan 1, 2021

Keywords: gene therapy; haemophilia; experience; views of people with haemophilia; nurse

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