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Increased burden on caregivers of having a child with haemophilia complicated by inhibitors

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Increased burden on caregivers of having a child with haemophilia complicated by inhibitors. / Lindvall, Karin; von Mackensen, Sylvia; Elmståhl, Sölve; Khair, Kate; Stain, Ann Marie; Ljung, Rolf; Berntorp, Erik.

In: PEDIATR BLOOD CANCER, Vol. 61, No. 4, 01.04.2014, p. 706-711.

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

Harvard

Lindvall, K, von Mackensen, S, Elmståhl, S, Khair, K, Stain, AM, Ljung, R & Berntorp, E 2014, 'Increased burden on caregivers of having a child with haemophilia complicated by inhibitors', PEDIATR BLOOD CANCER, vol. 61, no. 4, pp. 706-711. https://doi.org/10.1002/pbc.24856

APA

Lindvall, K., von Mackensen, S., Elmståhl, S., Khair, K., Stain, A. M., Ljung, R., & Berntorp, E. (2014). Increased burden on caregivers of having a child with haemophilia complicated by inhibitors. PEDIATR BLOOD CANCER, 61(4), 706-711. https://doi.org/10.1002/pbc.24856

Vancouver

Lindvall K, von Mackensen S, Elmståhl S, Khair K, Stain AM, Ljung R et al. Increased burden on caregivers of having a child with haemophilia complicated by inhibitors. PEDIATR BLOOD CANCER. 2014 Apr 1;61(4):706-711. https://doi.org/10.1002/pbc.24856

Bibtex

@article{bc09316894d34727beb949118eb991a8,
title = "Increased burden on caregivers of having a child with haemophilia complicated by inhibitors",
abstract = "INTRODUCTION: Having a child with a chronic disease often increases the burden in the family with more hospital visits, treatment administration, and increased worries for the ill child. A cross-sectional, international, multi-centre study in caregivers of children <18 years with haemophilia and inhibitor was performed at Haemophilia Treatment Centres in Sweden, UK, and Canada to evaluate caregivers' burden and their health-related quality of life (HRQoL) compared to that of caregivers of children on prophylaxis without inhibitors and caregivers of healthy children.METHODS: Caregivers of children with haemophilia completed several questionnaires (SF-36, Visual Analogue Scale of Interference (VAS), Caregivers' Burden Scale and Impact on Family Scale (IOF). Caregivers of healthy children completed only the SF-36. In addition, socio-demographic data were collected.RESULTS: In total, 143 caregivers were included in the study. Comparing the two haemophilia groups with caregivers of healthy children revealed significant differences for all SF-34 domains except 'pain' and 'general health'. In Caregivers' Burden Scale, caregivers of children with inhibitors reported higher impact of haemophilia (P < 0.0001) and higher impact on VAS (P < 0.0001) compared to caregivers of children without inhibitors. In IOF, caregivers of children with inhibitors reported significant negative impact of the disease, except for aspect of coping.CONCLUSION: Caregivers of children with inhibitors reported higher impact of the disease compared to caregivers of children with no inhibitors. No differences between mothers and fathers in the two groups for SF-36, Caregivers' Burden Scale, VAS and IOF, except for domain pain in SF-36 where mothers reported higher impairments.",
keywords = "Adaptation, Psychological, Adolescent, Adult, Anxiety, Blood Coagulation Factor Inhibitors, Caregivers, Case-Control Studies, Child, Child, Preschool, Cohort Studies, Cross-Sectional Studies, Factor VIII, Female, Follow-Up Studies, Health Status, Hemophilia A, Humans, Immune Tolerance, Infant, International Agencies, Male, Middle Aged, Prognosis, Quality of Life, Questionnaires",
author = "Karin Lindvall and {von Mackensen}, Sylvia and S{\"o}lve Elmst{\aa}hl and Kate Khair and Stain, {Ann Marie} and Rolf Ljung and Erik Berntorp",
note = "{\textcopyright} 2013 Wiley Periodicals, Inc.",
year = "2014",
month = apr,
day = "1",
doi = "10.1002/pbc.24856",
language = "English",
volume = "61",
pages = "706--711",
journal = "PEDIATR BLOOD CANCER",
issn = "1545-5009",
publisher = "Wiley-Liss Inc.",
number = "4",

}

RIS

TY - JOUR

T1 - Increased burden on caregivers of having a child with haemophilia complicated by inhibitors

AU - Lindvall, Karin

AU - von Mackensen, Sylvia

AU - Elmståhl, Sölve

AU - Khair, Kate

AU - Stain, Ann Marie

AU - Ljung, Rolf

AU - Berntorp, Erik

N1 - © 2013 Wiley Periodicals, Inc.

PY - 2014/4/1

Y1 - 2014/4/1

N2 - INTRODUCTION: Having a child with a chronic disease often increases the burden in the family with more hospital visits, treatment administration, and increased worries for the ill child. A cross-sectional, international, multi-centre study in caregivers of children <18 years with haemophilia and inhibitor was performed at Haemophilia Treatment Centres in Sweden, UK, and Canada to evaluate caregivers' burden and their health-related quality of life (HRQoL) compared to that of caregivers of children on prophylaxis without inhibitors and caregivers of healthy children.METHODS: Caregivers of children with haemophilia completed several questionnaires (SF-36, Visual Analogue Scale of Interference (VAS), Caregivers' Burden Scale and Impact on Family Scale (IOF). Caregivers of healthy children completed only the SF-36. In addition, socio-demographic data were collected.RESULTS: In total, 143 caregivers were included in the study. Comparing the two haemophilia groups with caregivers of healthy children revealed significant differences for all SF-34 domains except 'pain' and 'general health'. In Caregivers' Burden Scale, caregivers of children with inhibitors reported higher impact of haemophilia (P < 0.0001) and higher impact on VAS (P < 0.0001) compared to caregivers of children without inhibitors. In IOF, caregivers of children with inhibitors reported significant negative impact of the disease, except for aspect of coping.CONCLUSION: Caregivers of children with inhibitors reported higher impact of the disease compared to caregivers of children with no inhibitors. No differences between mothers and fathers in the two groups for SF-36, Caregivers' Burden Scale, VAS and IOF, except for domain pain in SF-36 where mothers reported higher impairments.

AB - INTRODUCTION: Having a child with a chronic disease often increases the burden in the family with more hospital visits, treatment administration, and increased worries for the ill child. A cross-sectional, international, multi-centre study in caregivers of children <18 years with haemophilia and inhibitor was performed at Haemophilia Treatment Centres in Sweden, UK, and Canada to evaluate caregivers' burden and their health-related quality of life (HRQoL) compared to that of caregivers of children on prophylaxis without inhibitors and caregivers of healthy children.METHODS: Caregivers of children with haemophilia completed several questionnaires (SF-36, Visual Analogue Scale of Interference (VAS), Caregivers' Burden Scale and Impact on Family Scale (IOF). Caregivers of healthy children completed only the SF-36. In addition, socio-demographic data were collected.RESULTS: In total, 143 caregivers were included in the study. Comparing the two haemophilia groups with caregivers of healthy children revealed significant differences for all SF-34 domains except 'pain' and 'general health'. In Caregivers' Burden Scale, caregivers of children with inhibitors reported higher impact of haemophilia (P < 0.0001) and higher impact on VAS (P < 0.0001) compared to caregivers of children without inhibitors. In IOF, caregivers of children with inhibitors reported significant negative impact of the disease, except for aspect of coping.CONCLUSION: Caregivers of children with inhibitors reported higher impact of the disease compared to caregivers of children with no inhibitors. No differences between mothers and fathers in the two groups for SF-36, Caregivers' Burden Scale, VAS and IOF, except for domain pain in SF-36 where mothers reported higher impairments.

KW - Adaptation, Psychological

KW - Adolescent

KW - Adult

KW - Anxiety

KW - Blood Coagulation Factor Inhibitors

KW - Caregivers

KW - Case-Control Studies

KW - Child

KW - Child, Preschool

KW - Cohort Studies

KW - Cross-Sectional Studies

KW - Factor VIII

KW - Female

KW - Follow-Up Studies

KW - Health Status

KW - Hemophilia A

KW - Humans

KW - Immune Tolerance

KW - Infant

KW - International Agencies

KW - Male

KW - Middle Aged

KW - Prognosis

KW - Quality of Life

KW - Questionnaires

U2 - 10.1002/pbc.24856

DO - 10.1002/pbc.24856

M3 - SCORING: Journal article

C2 - 24277475

VL - 61

SP - 706

EP - 711

JO - PEDIATR BLOOD CANCER

JF - PEDIATR BLOOD CANCER

SN - 1545-5009

IS - 4

ER -