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The multidimensional burden of informal caregivers in primary malignant brain tumor.

Identifieur interne : 000A97 ( Main/Exploration ); précédent : 000A96; suivant : 000A98

The multidimensional burden of informal caregivers in primary malignant brain tumor.

Auteurs : Eléonore Bayen [France] ; Florence Laigle-Donadey [France] ; Myrtille Prouté [France] ; Khê Hoang-Xuan [France] ; Marie-Eve Joël [France] ; Jean-Yves Delattre [France]

Source :

RBID : pubmed:27624465

Descripteurs français

English descriptors

Abstract

PURPOSE

Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective.

METHODS

Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated.

RESULTS

ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30-90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year).

CONCLUSIONS

IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.


DOI: 10.1007/s00520-016-3397-6
PubMed: 27624465


Affiliations:


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Le document en format XML

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<term>Activities of Daily Living (MeSH)</term>
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<term>Aged (MeSH)</term>
<term>Brain Neoplasms (psychology)</term>
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<term>Activities of Daily Living</term>
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<term>Cost of Illness</term>
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<term>Humans</term>
<term>Male</term>
<term>Middle Aged</term>
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<term>Activités de la vie quotidienne</term>
<term>Adulte</term>
<term>Adulte d'âge moyen</term>
<term>Analyse multifactorielle</term>
<term>Conjoints</term>
<term>Coûts indirects de la maladie</term>
<term>Enquêtes et questionnaires</term>
<term>Femelle</term>
<term>Humains</term>
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<div type="abstract" xml:lang="en">
<p>
<b>PURPOSE</b>
</p>
<p>Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective.</p>
</div>
<div type="abstract" xml:lang="en">
<p>
<b>METHODS</b>
</p>
<p>Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated.</p>
</div>
<div type="abstract" xml:lang="en">
<p>
<b>RESULTS</b>
</p>
<p>ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30-90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year).</p>
</div>
<div type="abstract" xml:lang="en">
<p>
<b>CONCLUSIONS</b>
</p>
<p>IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.</p>
</div>
</front>
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<Abstract>
<AbstractText Label="PURPOSE">Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective.</AbstractText>
<AbstractText Label="METHODS">Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated.</AbstractText>
<AbstractText Label="RESULTS">ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30-90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year).</AbstractText>
<AbstractText Label="CONCLUSIONS">IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.</AbstractText>
</Abstract>
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<LastName>Bayen</LastName>
<ForeName>Eléonore</ForeName>
<Initials>E</Initials>
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<Affiliation>Department of Neuro-Rehabilitation, Pitié-Salpêtrière Hospital, Paris, France. bayen.eleonore@gmail.com.</Affiliation>
</AffiliationInfo>
<AffiliationInfo>
<Affiliation>Health Economics Department LEDa-LEGOS, PSL University Paris-Dauphine, Paris, France. bayen.eleonore@gmail.com.</Affiliation>
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</AffiliationInfo>
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<ForeName>Myrtille</ForeName>
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<Affiliation>Health Economics Department LEDa-LEGOS, PSL University Paris-Dauphine, Paris, France.</Affiliation>
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<LastName>Hoang-Xuan</LastName>
<ForeName>Khê</ForeName>
<Initials>K</Initials>
<AffiliationInfo>
<Affiliation>Department of Neuro-Oncology, Pitié-Salpêtrière Hospital, Paris, France.</Affiliation>
</AffiliationInfo>
<AffiliationInfo>
<Affiliation>Sorbonne University UPMC Paris 06, CRICM, Paris, France.</Affiliation>
</AffiliationInfo>
<AffiliationInfo>
<Affiliation>INSERM U1127, Paris, France.</Affiliation>
</AffiliationInfo>
<AffiliationInfo>
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<ForeName>Marie-Eve</ForeName>
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</AffiliationInfo>
<AffiliationInfo>
<Affiliation>Sorbonne University UPMC Paris 06, CRICM, Paris, France.</Affiliation>
</AffiliationInfo>
<AffiliationInfo>
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</AffiliationInfo>
<AffiliationInfo>
<Affiliation>CNRS, UMR 7225, Paris, France.</Affiliation>
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<Year>2016</Year>
<Month>09</Month>
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<DescriptorName UI="D000203" MajorTopicYN="N">Activities of Daily Living</DescriptorName>
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<DescriptorName UI="D005260" MajorTopicYN="N">Female</DescriptorName>
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<MeshHeading>
<DescriptorName UI="D008297" MajorTopicYN="N">Male</DescriptorName>
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