Observational studyHaemophilia : the official journal of the World Federation of Hemophilia2022
Pain, depression and anxiety in people with haemophilia from three Nordic countries: Cross-sectional survey data from the MIND study.
Observational study in Haemophilia : the official journal of the World Federation of Hemophilia, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03276130 (Management of Health-Related Quality of LIfe Impairment, Including Pain, Depression and Anxiety, in People With Haemophilia A and B), which is not on this map. Cited by 13 papers.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Management of Health-Related Quality of LIfe Impairment, Including Pain, Depression and Anxiety, in People With Haemophilia A and B
Who cites it
13 citing papers in PubMed.
- Psychosocial Outcomes and Quality of Life in Patients with Hemophilia a Without Inhibitors: The HemoLIFE Study.Journal of clinical medicine · 2026Article
- Disease burden and unmet medical need in severe hemophilia in Greece: insights from clinicians and patients.Frontiers in public health · 2026Article
- Clinical Burden and Healthcare Resource Use Among Adults Living with Hemophilia A: An Observational Study.Drugs - real world outcomes · 2025Article
- FRONTIER1 multiple ascending dose extension: a safety, tolerability, pharmacokinetics, and pharmacodynamics study of Mim8 in people with hemophilia A.Research and practice in thrombosis and haemostasis · 2025Article
- Factors Influencing Symptoms of Depression, Anxiety and Stress in Patients With Haemophilia.Haemophilia : the official journal of the World Federation of Hemophilia · 2025Article
- Assessing the health-state utility values of rare disease-hemophilia B using EQ-5D-5L: a study based on the Chinese population.Orphanet journal of rare diseases · 2025Article
- Comorbidity and Mortality in Men and Women With Haemophilia in Three Nordic Countries-Comparisons to Matched Controls.Haemophilia : the official journal of the World Federation of Hemophilia · 2025Observational
- Influencing factors of the outcome of patients with haemophilia after knee replacement-a retrospective study.BMC musculoskeletal disorders · 2025Article
- A Retrospective Observational Study of Quality of Life in a Northern Greece Population of People with Haemophilia.Life (Basel, Switzerland) · 2024Article
- High use of pain, depression, and anxiety drugs in hemophilia: more than 3000 people with hemophilia in an 11-year Nordic registry study.Research and practice in thrombosis and haemostasis · 2023Article
- Pain, depression and anxiety in people with haemophilia from three Nordic countries: Cross-sectional survey data from the MIND study.Haemophilia : the official journal of the World Federation of Hemophilia · 2022Observational
- Hemophilia Severity and Its Association With Mental Health and Health-Related Quality of Life-Results From a Cross-Sectional Multicenter Study.Haemophilia : the official journal of the World Federation of HemophiliaObservational
- florio HAEMO-A Digital Medical Device for Monitoring of Treatment, Symptoms and Physical Activities for People Living With Haemophilia.Haemophilia : the official journal of the World Federation of HemophiliaArticle
Corrections and comments
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Authors and funding
11 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionPeople with haemophilia (PwH) may experience symptoms of haemophilia-related pain, depression or anxiety, which can negatively impact health-related quality of life.
aimTo 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).
methodsPwH 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.
resultsThere 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.
conclusionsPain 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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