Abstract
Introduction: Prophylactic 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. Aim: To quantify prophylaxis adherence and associations between adherence and patients’ treatment attitudes and satisfaction in a large cohort of children and adults with haemophilia. Methods: In 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. Results: Among 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.
Original language | English |
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Pages (from-to) | 581-590 |
Number of pages | 10 |
Journal | Haemophilia |
Volume | 27 |
Issue number | 4 |
DOIs | |
Publication status | Published - Jul 2021 |
Keywords
- adherence
- compliance
- haemophilia
- patient activation
- treatment satisfaction
- Cross-Sectional Studies
- Humans
- Middle Aged
- Hemophilia A/drug therapy
- Self-Management
- Personal Satisfaction
- Young Adult
- Medication Adherence
- Adolescent
- Adult
- Surveys and Questionnaires
- Child
- Infant, Newborn