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The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)

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The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study). / Khair, Kate; Klukowska, Anna; Myrin Westesson, Linda; Kavakli, Kaan; Escuriola, Carmen; Uitslager, Nanda; Santoro, Cristina; Holland, Mike; von Mackensen, Sylvia.

In: HAEMOPHILIA, Vol. 25, No. 3, 05.2019, p. 416-423.

Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

Harvard

Khair, K, Klukowska, A, Myrin Westesson, L, Kavakli, K, Escuriola, C, Uitslager, N, Santoro, C, Holland, M & von Mackensen, S 2019, 'The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)', HAEMOPHILIA, vol. 25, no. 3, pp. 416-423. https://doi.org/10.1111/hae.13736

APA

Khair, K., Klukowska, A., Myrin Westesson, L., Kavakli, K., Escuriola, C., Uitslager, N., Santoro, C., Holland, M., & von Mackensen, S. (2019). The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study). HAEMOPHILIA, 25(3), 416-423. https://doi.org/10.1111/hae.13736

Vancouver

Khair K, Klukowska A, Myrin Westesson L, Kavakli K, Escuriola C, Uitslager N et al. The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study). HAEMOPHILIA. 2019 May;25(3):416-423. https://doi.org/10.1111/hae.13736

Bibtex

@article{0d3fd60d7253437c8a0f792aeb46ec43,
title = "The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)",
abstract = "INTRODUCTION: Treatment burden for the people with haemophilia has been documented, as has the burden of caring for a child with a common chronic disease such as asthma or diabetes. However, there remains a paucity of data about caregiver burden in haemophilia.AIMS: The aim of this study was to evaluate the impact of bleeding on caregivers of children with haemophilia. Caregiver burden was stratified by the clinical status of their child.METHODS: A multinational, non-interventional study of caregivers of children with severe or moderate haemophilia, using the HEMOCABquestionnaire to evaluate caregiver burden.RESULTS: A total of 144 caregivers from seven EU countries participated in the study. Differences in caregiver burden were identified based on the clinical situation of the child. Greater burden was seen in caregivers of children who experienced joint bleeding in the preceding 12 months, or had target joints or reduced range of motion in most domains of the HEMOCAB. Caring for a child with a current inhibitor also caused significantly higher burden for caregivers when compared to caring for a child with tolerized inhibitor or without inhibitor. Caregivers of children with chronic pain reported significantly higher burden in all domains of the HEMOCAB except for {"}interaction with the father.{"}CONCLUSION: Caregiver burden can be affected by the child's haemophilia status, particularly if joint health is impacted (eg bleeds, decreased mobility) or if the child suffers from chronic pain which was moderately correlated with joint bleeds.",
keywords = "Adult, Caregivers/psychology, Child, Female, Hemophilia A/complications, Hemophilia B/complications, Hemorrhage/complications, Humans, Male, Quality of Life, Surveys and Questionnaires",
author = "Kate Khair and Anna Klukowska and {Myrin Westesson}, Linda and Kaan Kavakli and Carmen Escuriola and Nanda Uitslager and Cristina Santoro and Mike Holland and {von Mackensen}, Sylvia",
note = "{\textcopyright} 2019 John Wiley & Sons Ltd.",
year = "2019",
month = may,
doi = "10.1111/hae.13736",
language = "English",
volume = "25",
pages = "416--423",
journal = "HAEMOPHILIA",
issn = "1351-8216",
publisher = "Wiley-Blackwell",
number = "3",

}

RIS

TY - JOUR

T1 - The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)

AU - Khair, Kate

AU - Klukowska, Anna

AU - Myrin Westesson, Linda

AU - Kavakli, Kaan

AU - Escuriola, Carmen

AU - Uitslager, Nanda

AU - Santoro, Cristina

AU - Holland, Mike

AU - von Mackensen, Sylvia

N1 - © 2019 John Wiley & Sons Ltd.

PY - 2019/5

Y1 - 2019/5

N2 - INTRODUCTION: Treatment burden for the people with haemophilia has been documented, as has the burden of caring for a child with a common chronic disease such as asthma or diabetes. However, there remains a paucity of data about caregiver burden in haemophilia.AIMS: The aim of this study was to evaluate the impact of bleeding on caregivers of children with haemophilia. Caregiver burden was stratified by the clinical status of their child.METHODS: A multinational, non-interventional study of caregivers of children with severe or moderate haemophilia, using the HEMOCABquestionnaire to evaluate caregiver burden.RESULTS: A total of 144 caregivers from seven EU countries participated in the study. Differences in caregiver burden were identified based on the clinical situation of the child. Greater burden was seen in caregivers of children who experienced joint bleeding in the preceding 12 months, or had target joints or reduced range of motion in most domains of the HEMOCAB. Caring for a child with a current inhibitor also caused significantly higher burden for caregivers when compared to caring for a child with tolerized inhibitor or without inhibitor. Caregivers of children with chronic pain reported significantly higher burden in all domains of the HEMOCAB except for "interaction with the father."CONCLUSION: Caregiver burden can be affected by the child's haemophilia status, particularly if joint health is impacted (eg bleeds, decreased mobility) or if the child suffers from chronic pain which was moderately correlated with joint bleeds.

AB - INTRODUCTION: Treatment burden for the people with haemophilia has been documented, as has the burden of caring for a child with a common chronic disease such as asthma or diabetes. However, there remains a paucity of data about caregiver burden in haemophilia.AIMS: The aim of this study was to evaluate the impact of bleeding on caregivers of children with haemophilia. Caregiver burden was stratified by the clinical status of their child.METHODS: A multinational, non-interventional study of caregivers of children with severe or moderate haemophilia, using the HEMOCABquestionnaire to evaluate caregiver burden.RESULTS: A total of 144 caregivers from seven EU countries participated in the study. Differences in caregiver burden were identified based on the clinical situation of the child. Greater burden was seen in caregivers of children who experienced joint bleeding in the preceding 12 months, or had target joints or reduced range of motion in most domains of the HEMOCAB. Caring for a child with a current inhibitor also caused significantly higher burden for caregivers when compared to caring for a child with tolerized inhibitor or without inhibitor. Caregivers of children with chronic pain reported significantly higher burden in all domains of the HEMOCAB except for "interaction with the father."CONCLUSION: Caregiver burden can be affected by the child's haemophilia status, particularly if joint health is impacted (eg bleeds, decreased mobility) or if the child suffers from chronic pain which was moderately correlated with joint bleeds.

KW - Adult

KW - Caregivers/psychology

KW - Child

KW - Female

KW - Hemophilia A/complications

KW - Hemophilia B/complications

KW - Hemorrhage/complications

KW - Humans

KW - Male

KW - Quality of Life

KW - Surveys and Questionnaires

U2 - 10.1111/hae.13736

DO - 10.1111/hae.13736

M3 - SCORING: Journal article

C2 - 30925018

VL - 25

SP - 416

EP - 423

JO - HAEMOPHILIA

JF - HAEMOPHILIA

SN - 1351-8216

IS - 3

ER -