<abstract xmlns="http://www.w3.org/1999/xhtml"><p> Long-standing inhibitors present many day-today difficulties for the affected individual; the unpredictability of bleeds, bleed management, pain and treatment efficacy all affect quality of life. This study explored these issues through focus groups of affected individuals aged 16-25 in the UK. The data from the focus groups was analysed for recurring themes, which were coded under three umbrella headings: ‘daily impact’, ‘education and future’ and ‘resilience and support’. Participants felt isolated through geography and being extra ‘rare’ within the bleeding disorders community; used pain as a gauge of bleed resolution, often without use of analgesia; described transition to adult care as particularly worrying; and explained the potential impact of living with an inhibitor on future career options. Peer-to-peer networking could provide emotional support for these young adults, who could also be role models for the future. Despite the burden of living with an inhibitor and its treatment, participants described a good quality of life from their own perspectives. With new therapeutic options for these individuals on the horizon, they look forward to a future with fewer bleeds and less pain.</p></abstract>

Long-standing inhibitors present many day-today difficulties for the affected individual; the unpredictability of bleeds, bleed management, pain and treatment efficacy all affect quality of life. This study explored these issues through focus groups of affected individuals aged 16-25 in the UK. The data from the focus groups was analysed for recurring themes, which were coded under three umbrella headings: ‘daily impact’, ‘education and future’ and ‘resilience and support’. Participants felt isolated through geography and being extra ‘rare’ within the bleeding disorders community; used pain as a gauge of bleed resolution, often without use of analgesia; described transition to adult care as particularly worrying; and explained the potential impact of living with an inhibitor on future career options. Peer-to-peer networking could provide emotional support for these young adults, who could also be role models for the future. Despite the burden of living with an inhibitor and its treatment, participants described a good quality of life from their own perspectives. With new therapeutic options for these individuals on the horizon, they look forward to a future with fewer bleeds and less pain.

Living with an inhibitor: Results from the Study of Haemophilia Experiences, Results and Opportunities in Children and young adults with long-standing inhibitors (the SO-HEROIC study)

The Journal of Haemophilia Practice

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Long-standing inhibitors present many day-today difficulties for the affected individual; the unpredictability of bleeds, bleed management, pain and treatment...

Living with an inhibitor: Results from the Study of Haemophilia Experiences, Results and Opportunities in Children and young adults with long-standing inhibitors (the SO-HEROIC study)

Article Category: Clinical Research

Published Online: May 31, 2018

Page range: 24 - 34

DOI: https://doi.org/10.17225/jhp00109

Keywords
haemophilia, inhibitor, quality of life

© 2018 Kate Khair, Steve Chaplin, Mike Holland, published by Sciendo

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Living with an inhibitor: Results from the Study of Haemophilia Experiences, Results and Opportunities in Children and young adults with long-standing inhibitors (the SO-HEROIC study)

Article Category: Clinical Research

Published Online: May 31, 2018

Page range: 24 - 34

DOI: https://doi.org/10.17225/jhp00109

Keywordshaemophilia, inhibitor, quality of life

© 2018 Kate Khair, Steve Chaplin, Mike Holland, published by Sciendo

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Keywords
haemophilia, inhibitor, quality of life