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

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http://hdl.handle.net/10138/346633

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Carlsson , K S , Winding , B , Astermark , J , Baghaei , F , Brodin , E , Funding , E , Holmstrom , M , Österholm , K , Bergenstrale , S , Andersson , E & Lethagen , S 2022 , ' Pain, depression and anxiety in people with haemophilia from three Nordic countries : Cross-sectional survey data from the MIND study ' , Haemophilia , vol. 28 , no. 4 , pp. 557-567 . https://doi.org/10.1111/hae.14571

Title: Pain, depression and anxiety in people with haemophilia from three Nordic countries : Cross-sectional survey data from the MIND study
Author: Carlsson, Katarina Steen; Winding, Bent; Astermark, Jan; Baghaei, Fariba; Brodin, Elisabeth; Funding, Eva; Holmstrom, Margareta; Österholm, Klaus; Bergenstrale, Sofia; Andersson, Emelie; Lethagen, Stefan
Contributor organization: HUS Internal Medicine and Rehabilitation
Date: 2022-07
Language: eng
Number of pages: 11
Belongs to series: Haemophilia
ISSN: 1351-8216
DOI: https://doi.org/10.1111/hae.14571
URI: http://hdl.handle.net/10138/346633
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 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.
Subject: haemophilia A
haemophilia B
mental health
pain
quality of life
surveys and questionnaires
MANAGEMENT
ADULTS
PREVALENCE
Peer reviewed: Yes
Rights: cc_by_nc_nd
Usage restriction: openAccess
Self-archived version: publishedVersion


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