<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...

DAILY IMPACT	EDUCATION AND FUTURE	RESILIENCE AND SUPPORT
Hospitals/transition/complexity of care	Issues at school	Importance of family
Self-management and treatment burden	Leaving home/going to university	Friends and relationships
Impact of bleeds	Careers and travel	Self-esteem
Pain	Future treatment(s)	Inhibitor community
Inhibitor knowledge and understanding
Failed ITT

PARTICIPANT	DIAGNOSIS	AGE	SEVERITY	ITT	CURRENT TREATMENT	CVAD
1	Factor VII deficiency	17	Severe	Yes	BPA prophylaxis	Yes
2	Haemophilia A	20	Mild	No	DDAVP or BPA on demand	No
3	Haemophilia A	18	Severe	Yes	BPA prophylaxis	Yes
4	Haemophilia A	22	Severe	Yes	BPA on demand	No
5	Haemophilia B	24	Severe	No	BPA prophylaxis	No
6	Haemophilia A	17	Severe	Yes	BPA prophylaxis	No

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.

Image

Themes and sub-topics

Demographic data

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.

Image

Themes and sub-topics

Demographic data

Keywords
haemophilia, inhibitor, quality of life