ArticleHaemophilia : the official journal of the World Federation of Hemophilia2021
Adherence to prophylaxis and its association with activation of self-management and treatment satisfaction.
Article in Haemophilia : the official journal of the World Federation of Hemophilia, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
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Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it, 16 citations in OpenAlex.
- Assessment Tools for Adherence to Prophylactic Haemophilia Treatment in Adult and Adolescent Patients: A Systematic Review.Haemophilia : the official journal of the World Federation of HemophiliaPooled it
- Evolution of Hemophilia Management in Italy: Results from a Delphi Consensus Study.Journal of clinical medicine · 2026Article
- More real-world evidence on the impact of emicizumab.Research and practice in thrombosis and haemostasis · 2025Article
- Assessment of Clinical Characteristics and Sociocontextual Factors on Medication Adherence in Children and Adolescents With Hemophilia.Pediatric blood & cancer · 2025Article
- Investigation of the Relationship Between Self-Management and Kinesiophobia in Haemophiliac Individuals Experiencing Intra-Articular Bleeding.Haemophilia : the official journal of the World Federation of Hemophilia · 2025Article
- Patients' and health care providers' perspectives on quality of hemophilia care in the Netherlands: a questionnaire and interview study.Research and practice in thrombosis and haemostasis · 2023Article
- Adherence tool for prophylactic haemophilia treatment in adult and adolescent patients: A systematic review and meta-analysis protocol.PloS one · 2023Article
- Modeling Benefits, Costs, and Affordability of a Novel Gene Therapy in Hemophilia A.HemaSphere · 2022Article
- Adherence to prophylaxis and its association with activation of self-management and treatment satisfaction.Haemophilia : the official journal of the World Federation of Hemophilia · 2021Article
- Adherence to Clotting Factor Prophylaxis in Adolescent and Adult Males With Haemophilia.Haemophilia : the official journal of the World Federation of HemophiliaArticle
Corrections and comments
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Authors and funding
10 authors at 6 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionProphylactic replacement therapy (prophylaxis) in patients with haemophilia (PWH) requires lifelong, frequent (self)infusions. Prophylaxis effectiveness depends on adherence, and the drivers of treatment adherence among PWH are unclear.
aimTo quantify prophylaxis adherence and associations between adherence and patients' treatment attitudes and satisfaction in a large cohort of children and adults with haemophilia.
methodsIn a nationwide, cross-sectional, questionnaire-based study, PWH with complete information currently using prophylaxis were selected. Validated Hemophilia Regimen Treatment Adherence Scale-Prophylaxis (VERITAS-Pro; normalised score range: 0-100, optimum 0) measured treatment adherence; the Patient Activation Measure (PAM-13; total score range 0-100, optimum 100) measured activation of self-management; Hemophilia Patient Satisfaction Scale (Hemo-Sat; range 0-100, optimum 0) measured treatment satisfaction. Groups were compared according to age (children: <12 years; adolescents: 12-18 years; adults >18 years) and adherence levels using non-parametric tests, and correlations were assessed using Spearman's rho.
resultsAmong 321 participants (median age 33 years, interquartile range [IQR]:15-54 years), adherence was high (median VERITAS-Pro total score 17, 89% adherent) but worsened with age, with median scores of 5, 14 and 20 in children, adolescents, adults, respectively (p < .001). Attitudes towards treatment (median 66 vs. 68) participants and treatment satisfaction (12 vs. 10) were similar between adherent and non-adherent patients. The VERITAS-Pro total score was moderately correlated with PAM-13 (r = .41) but not with Hemo-Sat (r = -.11). DISCUSSION: Prophylaxis adherence was high (89%) but decreased significantly with age and was not correlated with treatment attitude or treatment satisfaction.
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