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, Jahrgang 25, Nr. 3, 05.2019, S. 416-423.Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung
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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 -