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Adherence to prophylaxis in adolescents and young adults with severe haemophilia, A qualitative study with patients. / Van Os, Sandra; Ryder, Nuala; Hart, Daniel; Troop, Nicholas.

In: Health Psychology and Behavioral Medicine, Vol. 6, No. 1, 24.09.2018, p. 277-300.

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@article{2000ddb1c8d8412d8998435f7e16c5b9,
title = "Adherence to prophylaxis in adolescents and young adults with severe haemophilia, A qualitative study with patients",
abstract = "AbstractIntroduction: Reported levels of adherence to prophylaxis among young people with haemophilia (YPH) vary widely and are predominately based on estimations made by healthcare professionals and parents. Reasons for (non)adherence among YPH in particular have not been evidenced.Aim: to examine experiences in relation to prophylaxis with YPH themselves, and barriers and facilitators to their adherence.Methods: 11 Participants were recruited in five haemophilia centres across England and Wales. All patients who met the inclusion criteria (aged 12-25, diagnosed with haemophilia, on prophylaxis) were approached during a routine check-up appointment, and all participants who agreed to take part wereinterviewed. Interviews were audio recorded, transcribed and analysed using Interpretative Phenomenological Analysis.Results: Self-reported adherence to prophylaxis was good. Few participants admitted to intentionally skipping injections although they reported sometimes forgetting. However, due to the increasingly personalised and flexible approach to prophylaxis, adherence is not straightforward to define. Barriers to adherence included a busy lifestyle, dislike of the intravenous injection, venous access issues, anxiety or stress and being out of one{\textquoteright}s normal routine. Support was an important facilitator to adherence, including support from health professionals at the haemophilia centre as well as friends. Parents appear to be very involved with their sons{\textquoteright} haemophilia management, even after their sons leave home.Conclusion: What this study adds is that the increasingly flexible and personalized approach to managing prophylaxis in haemophilia may sometimes lead to confusion around treatment frequency and dosing. This may lead to accidental non-adherence, which is distinct from both skipping andforgetting. Advice from haemophilia teams may not always be consistent, and is likely to be interpreted differently by different individuals. Some additional training and education of patients and their families to increase their knowledge and skills around prophylaxis may reduce this confusion and therefore is likely to improve adherence further.",
author = "{Van Os}, Sandra and Nuala Ryder and Daniel Hart and Nicholas Troop",
note = "{\textcopyright} 2018 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. ",
year = "2018",
month = sep,
day = "24",
doi = "10.1080/21642850.2018.1493384",
language = "English",
volume = "6",
pages = "277--300",
journal = "Health Psychology and Behavioral Medicine",
issn = "2164-2850",
publisher = "Taylor & Francis",
number = "1",

}

RIS

TY - JOUR

T1 - Adherence to prophylaxis in adolescents and young adults with severe haemophilia, A qualitative study with patients

AU - Van Os, Sandra

AU - Ryder, Nuala

AU - Hart, Daniel

AU - Troop, Nicholas

N1 - © 2018 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

PY - 2018/9/24

Y1 - 2018/9/24

N2 - AbstractIntroduction: Reported levels of adherence to prophylaxis among young people with haemophilia (YPH) vary widely and are predominately based on estimations made by healthcare professionals and parents. Reasons for (non)adherence among YPH in particular have not been evidenced.Aim: to examine experiences in relation to prophylaxis with YPH themselves, and barriers and facilitators to their adherence.Methods: 11 Participants were recruited in five haemophilia centres across England and Wales. All patients who met the inclusion criteria (aged 12-25, diagnosed with haemophilia, on prophylaxis) were approached during a routine check-up appointment, and all participants who agreed to take part wereinterviewed. Interviews were audio recorded, transcribed and analysed using Interpretative Phenomenological Analysis.Results: Self-reported adherence to prophylaxis was good. Few participants admitted to intentionally skipping injections although they reported sometimes forgetting. However, due to the increasingly personalised and flexible approach to prophylaxis, adherence is not straightforward to define. Barriers to adherence included a busy lifestyle, dislike of the intravenous injection, venous access issues, anxiety or stress and being out of one’s normal routine. Support was an important facilitator to adherence, including support from health professionals at the haemophilia centre as well as friends. Parents appear to be very involved with their sons’ haemophilia management, even after their sons leave home.Conclusion: What this study adds is that the increasingly flexible and personalized approach to managing prophylaxis in haemophilia may sometimes lead to confusion around treatment frequency and dosing. This may lead to accidental non-adherence, which is distinct from both skipping andforgetting. Advice from haemophilia teams may not always be consistent, and is likely to be interpreted differently by different individuals. Some additional training and education of patients and their families to increase their knowledge and skills around prophylaxis may reduce this confusion and therefore is likely to improve adherence further.

AB - AbstractIntroduction: Reported levels of adherence to prophylaxis among young people with haemophilia (YPH) vary widely and are predominately based on estimations made by healthcare professionals and parents. Reasons for (non)adherence among YPH in particular have not been evidenced.Aim: to examine experiences in relation to prophylaxis with YPH themselves, and barriers and facilitators to their adherence.Methods: 11 Participants were recruited in five haemophilia centres across England and Wales. All patients who met the inclusion criteria (aged 12-25, diagnosed with haemophilia, on prophylaxis) were approached during a routine check-up appointment, and all participants who agreed to take part wereinterviewed. Interviews were audio recorded, transcribed and analysed using Interpretative Phenomenological Analysis.Results: Self-reported adherence to prophylaxis was good. Few participants admitted to intentionally skipping injections although they reported sometimes forgetting. However, due to the increasingly personalised and flexible approach to prophylaxis, adherence is not straightforward to define. Barriers to adherence included a busy lifestyle, dislike of the intravenous injection, venous access issues, anxiety or stress and being out of one’s normal routine. Support was an important facilitator to adherence, including support from health professionals at the haemophilia centre as well as friends. Parents appear to be very involved with their sons’ haemophilia management, even after their sons leave home.Conclusion: What this study adds is that the increasingly flexible and personalized approach to managing prophylaxis in haemophilia may sometimes lead to confusion around treatment frequency and dosing. This may lead to accidental non-adherence, which is distinct from both skipping andforgetting. Advice from haemophilia teams may not always be consistent, and is likely to be interpreted differently by different individuals. Some additional training and education of patients and their families to increase their knowledge and skills around prophylaxis may reduce this confusion and therefore is likely to improve adherence further.

U2 - 10.1080/21642850.2018.1493384

DO - 10.1080/21642850.2018.1493384

M3 - Article

VL - 6

SP - 277

EP - 300

JO - Health Psychology and Behavioral Medicine

JF - Health Psychology and Behavioral Medicine

SN - 2164-2850

IS - 1

ER -