Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis

K. Van Der Hiele*, D.A.M. Van Gorp, M.A.P. Heerings, P.J. Jongen, J.J.L. Van Der Klink, E.A.C. Beenakker, J. Van Eijk, S. Frequin, B. Van Geel, G. Hengstman, E. Hoitsma, J. Mostert, W. Verhagen, K. De Gans, D. Zemel, H. Middelkoop, L. Visser

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review

Abstract

Background
Multiple sclerosis (MS) is a chronic disorder of the central nervous system with an unpredictable disease course. Life partners often become caregivers, which can be both rewarding and challenging, as the caregiver's physical and mental health is often negatively affected. Previous studies on caregiver strain focused on caregivers of persons with MS with relatively high disability levels, while caregiver strain may already be experienced by life partners living with mildly disabled persons with MS.

Objective
The current study examines factors associated with caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS.

Methods
We included 173 persons with relapsing-remitting MS (79% female; mean age 42.8 years; 90% employed; median EDSS 2.0) and their life partners. The life partners completed questionnaires on caregiver strain and neuropsychiatric and cognitive functioning of the person with MS. The persons with MS completed questionnaires about demographics, fatigue, personality, physical, cognitive and neuropsychiatric functioning, and underwent neuropsychological and neurological examinations. A linear regression analysis was conducted to examine predictors of caregiver strain.

Results
24% of the life partners experienced above average levels of caregiver strain. A multivariate linear regression analysis revealed that a higher age of the person with MS (β = 0.16, p = 0.04), more physical disability (β = 0.17 p = 0.04), more cognitive and neuropsychiatric problems of the person with MS as reported by the life partner (β = 0.33, p = 0.001) and higher severity of neuropsychiatric symptoms as reported by the life partner (β = 0.32, p = 0.001) were associated with higher caregiver strain (R2 = 0.49).

Conclusion
Higher caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS was primarily associated with cognitive and neuropsychiatric problems of the person with MS.
Original languageEnglish
Pages (from-to)5-11
JournalMultiple Sclerosis and Related Disorders
Volume31
DOIs
Publication statusPublished - 2019

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Relapsing-Remitting Multiple Sclerosis
Disabled Persons
Caregivers
Linear Models
Central Nervous System Diseases
Neurologic Examination
Mental Health

Keywords

  • ANXIETY
  • BURDEN
  • CARERS
  • Caregiver strain
  • Cognition
  • DEPRESSION
  • IMPACT
  • INVENTORY
  • Life partners
  • Multiple sclerosis
  • Neuropsychiatry
  • PEOPLE
  • QUALITY
  • RELIABILITY
  • VALIDITY

Cite this

Van Der Hiele, K. ; Van Gorp, D.A.M. ; Heerings, M.A.P. ; Jongen, P.J. ; Van Der Klink, J.J.L. ; Beenakker, E.A.C. ; Van Eijk, J. ; Frequin, S. ; Van Geel, B. ; Hengstman, G. ; Hoitsma, E. ; Mostert, J. ; Verhagen, W. ; De Gans, K. ; Zemel, D. ; Middelkoop, H. ; Visser, L. / Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis. In: Multiple Sclerosis and Related Disorders. 2019 ; Vol. 31. pp. 5-11.
@article{88ef52ebd3694c6498695c409b47e952,
title = "Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis",
abstract = "BackgroundMultiple sclerosis (MS) is a chronic disorder of the central nervous system with an unpredictable disease course. Life partners often become caregivers, which can be both rewarding and challenging, as the caregiver's physical and mental health is often negatively affected. Previous studies on caregiver strain focused on caregivers of persons with MS with relatively high disability levels, while caregiver strain may already be experienced by life partners living with mildly disabled persons with MS.ObjectiveThe current study examines factors associated with caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS.MethodsWe included 173 persons with relapsing-remitting MS (79{\%} female; mean age 42.8 years; 90{\%} employed; median EDSS 2.0) and their life partners. The life partners completed questionnaires on caregiver strain and neuropsychiatric and cognitive functioning of the person with MS. The persons with MS completed questionnaires about demographics, fatigue, personality, physical, cognitive and neuropsychiatric functioning, and underwent neuropsychological and neurological examinations. A linear regression analysis was conducted to examine predictors of caregiver strain.Results24{\%} of the life partners experienced above average levels of caregiver strain. A multivariate linear regression analysis revealed that a higher age of the person with MS (β = 0.16, p = 0.04), more physical disability (β = 0.17 p = 0.04), more cognitive and neuropsychiatric problems of the person with MS as reported by the life partner (β = 0.33, p = 0.001) and higher severity of neuropsychiatric symptoms as reported by the life partner (β = 0.32, p = 0.001) were associated with higher caregiver strain (R2 = 0.49).ConclusionHigher caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS was primarily associated with cognitive and neuropsychiatric problems of the person with MS.",
keywords = "ANXIETY, BURDEN, CARERS, Caregiver strain, Cognition, DEPRESSION, IMPACT, INVENTORY, Life partners, Multiple sclerosis, Neuropsychiatry, PEOPLE, QUALITY, RELIABILITY, VALIDITY",
author = "{Van Der Hiele}, K. and {Van Gorp}, D.A.M. and M.A.P. Heerings and P.J. Jongen and {Van Der Klink}, J.J.L. and E.A.C. Beenakker and {Van Eijk}, J. and S. Frequin and {Van Geel}, B. and G. Hengstman and E. Hoitsma and J. Mostert and W. Verhagen and {De Gans}, K. and D. Zemel and H. Middelkoop and L. Visser",
year = "2019",
doi = "10.1016/j.msard.2019.03.005",
language = "English",
volume = "31",
pages = "5--11",
journal = "Multiple Sclerosis and Related Disorders",
issn = "2211-0348",

}

Van Der Hiele, K, Van Gorp, DAM, Heerings, MAP, Jongen, PJ, Van Der Klink, JJL, Beenakker, EAC, Van Eijk, J, Frequin, S, Van Geel, B, Hengstman, G, Hoitsma, E, Mostert, J, Verhagen, W, De Gans, K, Zemel, D, Middelkoop, H & Visser, L 2019, 'Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis', Multiple Sclerosis and Related Disorders, vol. 31, pp. 5-11. https://doi.org/10.1016/j.msard.2019.03.005

Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis. / Van Der Hiele, K.; Van Gorp, D.A.M.; Heerings, M.A.P.; Jongen, P.J.; Van Der Klink, J.J.L.; Beenakker, E.A.C.; Van Eijk, J.; Frequin, S.; Van Geel, B.; Hengstman, G.; Hoitsma, E.; Mostert, J.; Verhagen, W.; De Gans, K.; Zemel, D.; Middelkoop, H.; Visser, L.

In: Multiple Sclerosis and Related Disorders, Vol. 31, 2019, p. 5-11.

Research output: Contribution to journalArticleScientificpeer-review

TY - JOUR

T1 - Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis

AU - Van Der Hiele, K.

AU - Van Gorp, D.A.M.

AU - Heerings, M.A.P.

AU - Jongen, P.J.

AU - Van Der Klink, J.J.L.

AU - Beenakker, E.A.C.

AU - Van Eijk, J.

AU - Frequin, S.

AU - Van Geel, B.

AU - Hengstman, G.

AU - Hoitsma, E.

AU - Mostert, J.

AU - Verhagen, W.

AU - De Gans, K.

AU - Zemel, D.

AU - Middelkoop, H.

AU - Visser, L.

PY - 2019

Y1 - 2019

N2 - BackgroundMultiple sclerosis (MS) is a chronic disorder of the central nervous system with an unpredictable disease course. Life partners often become caregivers, which can be both rewarding and challenging, as the caregiver's physical and mental health is often negatively affected. Previous studies on caregiver strain focused on caregivers of persons with MS with relatively high disability levels, while caregiver strain may already be experienced by life partners living with mildly disabled persons with MS.ObjectiveThe current study examines factors associated with caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS.MethodsWe included 173 persons with relapsing-remitting MS (79% female; mean age 42.8 years; 90% employed; median EDSS 2.0) and their life partners. The life partners completed questionnaires on caregiver strain and neuropsychiatric and cognitive functioning of the person with MS. The persons with MS completed questionnaires about demographics, fatigue, personality, physical, cognitive and neuropsychiatric functioning, and underwent neuropsychological and neurological examinations. A linear regression analysis was conducted to examine predictors of caregiver strain.Results24% of the life partners experienced above average levels of caregiver strain. A multivariate linear regression analysis revealed that a higher age of the person with MS (β = 0.16, p = 0.04), more physical disability (β = 0.17 p = 0.04), more cognitive and neuropsychiatric problems of the person with MS as reported by the life partner (β = 0.33, p = 0.001) and higher severity of neuropsychiatric symptoms as reported by the life partner (β = 0.32, p = 0.001) were associated with higher caregiver strain (R2 = 0.49).ConclusionHigher caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS was primarily associated with cognitive and neuropsychiatric problems of the person with MS.

AB - BackgroundMultiple sclerosis (MS) is a chronic disorder of the central nervous system with an unpredictable disease course. Life partners often become caregivers, which can be both rewarding and challenging, as the caregiver's physical and mental health is often negatively affected. Previous studies on caregiver strain focused on caregivers of persons with MS with relatively high disability levels, while caregiver strain may already be experienced by life partners living with mildly disabled persons with MS.ObjectiveThe current study examines factors associated with caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS.MethodsWe included 173 persons with relapsing-remitting MS (79% female; mean age 42.8 years; 90% employed; median EDSS 2.0) and their life partners. The life partners completed questionnaires on caregiver strain and neuropsychiatric and cognitive functioning of the person with MS. The persons with MS completed questionnaires about demographics, fatigue, personality, physical, cognitive and neuropsychiatric functioning, and underwent neuropsychological and neurological examinations. A linear regression analysis was conducted to examine predictors of caregiver strain.Results24% of the life partners experienced above average levels of caregiver strain. A multivariate linear regression analysis revealed that a higher age of the person with MS (β = 0.16, p = 0.04), more physical disability (β = 0.17 p = 0.04), more cognitive and neuropsychiatric problems of the person with MS as reported by the life partner (β = 0.33, p = 0.001) and higher severity of neuropsychiatric symptoms as reported by the life partner (β = 0.32, p = 0.001) were associated with higher caregiver strain (R2 = 0.49).ConclusionHigher caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS was primarily associated with cognitive and neuropsychiatric problems of the person with MS.

KW - ANXIETY

KW - BURDEN

KW - CARERS

KW - Caregiver strain

KW - Cognition

KW - DEPRESSION

KW - IMPACT

KW - INVENTORY

KW - Life partners

KW - Multiple sclerosis

KW - Neuropsychiatry

KW - PEOPLE

KW - QUALITY

KW - RELIABILITY

KW - VALIDITY

U2 - 10.1016/j.msard.2019.03.005

DO - 10.1016/j.msard.2019.03.005

M3 - Article

VL - 31

SP - 5

EP - 11

JO - Multiple Sclerosis and Related Disorders

JF - Multiple Sclerosis and Related Disorders

SN - 2211-0348

ER -