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Pain, depression and anxiety in people with haemophilia from three Nordic countries : Cross-sectional survey data from the MIND study

Steen Carlsson, Katarina LU orcid ; Winding, Bent ; Astermark, Jan LU ; Baghaei, Fariba ; Brodin, Elisabeth ; Funding, Eva LU ; Holmström, Margareta ; Österholm, Klaus ; Bergenstråle, Sofia and Andersson, Emelie , et al. (2022) In Haemophilia 28(4). p.557-567
Abstract

Introduction: People with haemophilia (PwH) may experience symptoms of haemophilia-related pain, depression or anxiety, which can negatively impact health-related quality of life. Aim: To obtain the perspective of PwH and treaters from Sweden, Finland and Denmark on the management of haemophilia-related pain, depression and anxiety using cross-sectional survey data from the MIND study (NCT03276130). Methods: PwH or their caregivers completed a survey about experiences of pain, depression and anxiety related to haemophilia, and the standard EQ‑5D-5L instrument. Five investigators at haemophilia treatment centres (HTC) were sent a complementary survey containing questions about the management of pain and depression/anxiety. Results: There... (More)

Introduction: People with haemophilia (PwH) may experience symptoms of haemophilia-related pain, depression or anxiety, which can negatively impact health-related quality of life. Aim: To obtain the perspective of PwH and treaters from Sweden, Finland and Denmark on the management of haemophilia-related pain, depression and anxiety using cross-sectional survey data from the MIND study (NCT03276130). Methods: PwH or their caregivers completed a survey about experiences of pain, depression and anxiety related to haemophilia, and the standard EQ‑5D-5L instrument. Five investigators at haemophilia treatment centres (HTC) were sent a complementary survey containing questions about the management of pain and depression/anxiety. Results: There were 343 PwH (mild: 103; moderate: 53; severe: 180; seven lacking severity information) and 71 caregiver responses. Experience of pain in the last 6 months was reported by 50% of PwH respondents and 46% of caregiver respondents. Anxiety/depression was reported by 28% of PwH respondents. Reporting of pain and anxiety/depression was associated with disease severity. Whilst 62% of PwH who had experienced pain at any time point (n = 242) felt this was adequately addressed and treated at their HTC, only 24% of those who had experienced depression/anxiety (n = 127) felt this was adequately addressed. Disease severity was negatively associated with EQ-5D-5L utility value (p <.001). In the HTC survey, 4/5 and 2/5 agreed that pain and depression/anxiety, respectively, are adequately addressed. Conclusions: Pain and depression/anxiety occur more frequently with increasing haemophilia severity, with negative impacts on health-related quality of life. PwH with depression/anxiety or unaddressed pain could benefit from improved management strategies.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
haemophilia A, haemophilia B, mental health, pain, quality of life, surveys and questionnaires
in
Haemophilia
volume
28
issue
4
pages
557 - 567
publisher
Wiley-Blackwell
external identifiers
  • pmid:35460313
  • scopus:85128775964
ISSN
1351-8216
DOI
10.1111/hae.14571
language
English
LU publication?
yes
id
49aa156a-d188-43bb-9bc3-c0a45c9beac3
date added to LUP
2022-07-04 14:20:58
date last changed
2024-04-14 15:56:09
@article{49aa156a-d188-43bb-9bc3-c0a45c9beac3,
  abstract     = {{<p>Introduction: People with haemophilia (PwH) may experience symptoms of haemophilia-related pain, depression or anxiety, which can negatively impact health-related quality of life. Aim: To obtain the perspective of PwH and treaters from Sweden, Finland and Denmark on the management of haemophilia-related pain, depression and anxiety using cross-sectional survey data from the MIND study (NCT03276130). Methods: PwH or their caregivers completed a survey about experiences of pain, depression and anxiety related to haemophilia, and the standard EQ‑5D-5L instrument. Five investigators at haemophilia treatment centres (HTC) were sent a complementary survey containing questions about the management of pain and depression/anxiety. Results: There were 343 PwH (mild: 103; moderate: 53; severe: 180; seven lacking severity information) and 71 caregiver responses. Experience of pain in the last 6 months was reported by 50% of PwH respondents and 46% of caregiver respondents. Anxiety/depression was reported by 28% of PwH respondents. Reporting of pain and anxiety/depression was associated with disease severity. Whilst 62% of PwH who had experienced pain at any time point (n = 242) felt this was adequately addressed and treated at their HTC, only 24% of those who had experienced depression/anxiety (n = 127) felt this was adequately addressed. Disease severity was negatively associated with EQ-5D-5L utility value (p &lt;.001). In the HTC survey, 4/5 and 2/5 agreed that pain and depression/anxiety, respectively, are adequately addressed. Conclusions: Pain and depression/anxiety occur more frequently with increasing haemophilia severity, with negative impacts on health-related quality of life. PwH with depression/anxiety or unaddressed pain could benefit from improved management strategies.</p>}},
  author       = {{Steen Carlsson, Katarina and Winding, Bent and Astermark, Jan and Baghaei, Fariba and Brodin, Elisabeth and Funding, Eva and Holmström, Margareta and Österholm, Klaus and Bergenstråle, Sofia and Andersson, Emelie and Lethagen, Stefan}},
  issn         = {{1351-8216}},
  keywords     = {{haemophilia A; haemophilia B; mental health; pain; quality of life; surveys and questionnaires}},
  language     = {{eng}},
  number       = {{4}},
  pages        = {{557--567}},
  publisher    = {{Wiley-Blackwell}},
  series       = {{Haemophilia}},
  title        = {{Pain, depression and anxiety in people with haemophilia from three Nordic countries : Cross-sectional survey data from the MIND study}},
  url          = {{http://dx.doi.org/10.1111/hae.14571}},
  doi          = {{10.1111/hae.14571}},
  volume       = {{28}},
  year         = {{2022}},
}