Quality of life of couples living with sarcoidosis

Mareye Voortman*, Celine M. R. Hendriks, Paul Lodder, Marjolein Drent, Jolanda De Vries

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review

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Abstract

Background: 

Consequences of sarcoidosis are wide ranging, and the symptom burden has a great impact on patients' quality of life (QoL). However, the QoL of couples living with sarcoidosis has not yet been studied. 

Objectives: 

Our aim was to assess the QoL of couples living with sarcoidosis and to evaluate whether living with a partner with sarcoidosis influences the partner's QoL. Furthermore, we aimed to assess whether nonspecific symptoms (fatigue, cognitive failure, small fiber neuropathy (SFN)-related symptoms, depressive symptoms, and state/trait anxiety) predict QoL of partners as well as sarcoidosis patients. 

Method: 

Sarcoidosis outpatients, recruited at Maastricht University Medical Centre (n = 443), and their partners (n = 208) completed several questionnaires, including the World Health Organization QoL - BREF, Fatigue Assessment Scale, SFN screening list, and cognitive failure questionnaire. 

Results: 

QoL of the partners as well as the sarcoidosis patients was reduced compared with healthy controls, especially regarding the physical health domain. All nonspecific symptoms studied, as well as perceived social support, predicted one or more QoL domains in the sarcoidosis patients, but these factors did not predict the QoL of their partners. 

Conclusions: 

The QoL of partners of sarcoidosis patients was reduced, although to a lesser extent than that of the patients. Although the nonspecific symptoms and perceived social support were related to the patients' QoL, this was not the case for the partners. In the management of sarcoidosis, it is important to focus not only on the patients but also on their partners.

Original languageEnglish
Pages (from-to)373-382
JournalRespiration
Volume98
Issue number5
DOIs
Publication statusPublished - 2019

Keywords

  • Caregivers
  • partners
  • Quality of life
  • Sarcoidosis
  • Predictors
  • SMALL-FIBER NEUROPATHY
  • EVERYDAY COGNITIVE FAILURE
  • DEPRESSIVE SYMPTOMS
  • EXERCISE CAPACITY
  • MUSCLE STRENGTH
  • SOCIAL SUPPORT
  • FATIGUE
  • ANXIETY
  • PREVALENCE
  • PREDICTORS

Cite this

Voortman, Mareye ; Hendriks, Celine M. R. ; Lodder, Paul ; Drent, Marjolein ; De Vries, Jolanda. / Quality of life of couples living with sarcoidosis. In: Respiration. 2019 ; Vol. 98, No. 5. pp. 373-382.
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title = "Quality of life of couples living with sarcoidosis",
abstract = "Background: Consequences of sarcoidosis are wide ranging, and the symptom burden has a great impact on patients' quality of life (QoL). However, the QoL of couples living with sarcoidosis has not yet been studied. Objectives: Our aim was to assess the QoL of couples living with sarcoidosis and to evaluate whether living with a partner with sarcoidosis influences the partner's QoL. Furthermore, we aimed to assess whether nonspecific symptoms (fatigue, cognitive failure, small fiber neuropathy (SFN)-related symptoms, depressive symptoms, and state/trait anxiety) predict QoL of partners as well as sarcoidosis patients. Method: Sarcoidosis outpatients, recruited at Maastricht University Medical Centre (n = 443), and their partners (n = 208) completed several questionnaires, including the World Health Organization QoL - BREF, Fatigue Assessment Scale, SFN screening list, and cognitive failure questionnaire. Results: QoL of the partners as well as the sarcoidosis patients was reduced compared with healthy controls, especially regarding the physical health domain. All nonspecific symptoms studied, as well as perceived social support, predicted one or more QoL domains in the sarcoidosis patients, but these factors did not predict the QoL of their partners. Conclusions: The QoL of partners of sarcoidosis patients was reduced, although to a lesser extent than that of the patients. Although the nonspecific symptoms and perceived social support were related to the patients' QoL, this was not the case for the partners. In the management of sarcoidosis, it is important to focus not only on the patients but also on their partners.",
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author = "Mareye Voortman and Hendriks, {Celine M. R.} and Paul Lodder and Marjolein Drent and {De Vries}, Jolanda",
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Quality of life of couples living with sarcoidosis. / Voortman, Mareye; Hendriks, Celine M. R.; Lodder, Paul; Drent, Marjolein; De Vries, Jolanda.

In: Respiration, Vol. 98, No. 5, 2019, p. 373-382.

Research output: Contribution to journalArticleScientificpeer-review

TY - JOUR

T1 - Quality of life of couples living with sarcoidosis

AU - Voortman, Mareye

AU - Hendriks, Celine M. R.

AU - Lodder, Paul

AU - Drent, Marjolein

AU - De Vries, Jolanda

N1 - © 2019 The Author(s) Published by S. Karger AG, Basel.

PY - 2019

Y1 - 2019

N2 - Background: Consequences of sarcoidosis are wide ranging, and the symptom burden has a great impact on patients' quality of life (QoL). However, the QoL of couples living with sarcoidosis has not yet been studied. Objectives: Our aim was to assess the QoL of couples living with sarcoidosis and to evaluate whether living with a partner with sarcoidosis influences the partner's QoL. Furthermore, we aimed to assess whether nonspecific symptoms (fatigue, cognitive failure, small fiber neuropathy (SFN)-related symptoms, depressive symptoms, and state/trait anxiety) predict QoL of partners as well as sarcoidosis patients. Method: Sarcoidosis outpatients, recruited at Maastricht University Medical Centre (n = 443), and their partners (n = 208) completed several questionnaires, including the World Health Organization QoL - BREF, Fatigue Assessment Scale, SFN screening list, and cognitive failure questionnaire. Results: QoL of the partners as well as the sarcoidosis patients was reduced compared with healthy controls, especially regarding the physical health domain. All nonspecific symptoms studied, as well as perceived social support, predicted one or more QoL domains in the sarcoidosis patients, but these factors did not predict the QoL of their partners. Conclusions: The QoL of partners of sarcoidosis patients was reduced, although to a lesser extent than that of the patients. Although the nonspecific symptoms and perceived social support were related to the patients' QoL, this was not the case for the partners. In the management of sarcoidosis, it is important to focus not only on the patients but also on their partners.

AB - Background: Consequences of sarcoidosis are wide ranging, and the symptom burden has a great impact on patients' quality of life (QoL). However, the QoL of couples living with sarcoidosis has not yet been studied. Objectives: Our aim was to assess the QoL of couples living with sarcoidosis and to evaluate whether living with a partner with sarcoidosis influences the partner's QoL. Furthermore, we aimed to assess whether nonspecific symptoms (fatigue, cognitive failure, small fiber neuropathy (SFN)-related symptoms, depressive symptoms, and state/trait anxiety) predict QoL of partners as well as sarcoidosis patients. Method: Sarcoidosis outpatients, recruited at Maastricht University Medical Centre (n = 443), and their partners (n = 208) completed several questionnaires, including the World Health Organization QoL - BREF, Fatigue Assessment Scale, SFN screening list, and cognitive failure questionnaire. Results: QoL of the partners as well as the sarcoidosis patients was reduced compared with healthy controls, especially regarding the physical health domain. All nonspecific symptoms studied, as well as perceived social support, predicted one or more QoL domains in the sarcoidosis patients, but these factors did not predict the QoL of their partners. Conclusions: The QoL of partners of sarcoidosis patients was reduced, although to a lesser extent than that of the patients. Although the nonspecific symptoms and perceived social support were related to the patients' QoL, this was not the case for the partners. In the management of sarcoidosis, it is important to focus not only on the patients but also on their partners.

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KW - partners

KW - Quality of life

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KW - Predictors

KW - SMALL-FIBER NEUROPATHY

KW - EVERYDAY COGNITIVE FAILURE

KW - DEPRESSIVE SYMPTOMS

KW - EXERCISE CAPACITY

KW - MUSCLE STRENGTH

KW - SOCIAL SUPPORT

KW - FATIGUE

KW - ANXIETY

KW - PREVALENCE

KW - PREDICTORS

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DO - 10.1159/000501657

M3 - Article

C2 - 31437834

VL - 98

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EP - 382

JO - Respiration

JF - Respiration

SN - 0025-7931

IS - 5

ER -