Abstract Number: PB0809
Meeting: ISTH 2020 Congress
Theme: Hemophilia and Rare Bleeding Disorders » Hemophilia - Basic
Background: Prophylaxis with replacement factor is the gold standard for PwH. Adherence to prescribed regimens is low (30%-73%), including missed doses and self-adjustment of dosing regimens. It has been suggested that the desire for independence and freedom from restrictions may drive adherence behavior. As such, children and elderly who depend on others for medical care tend to have better adherence.
Aims: The HemACTIVE patient survey was used to evaluate the relationship between self-adjustment of physical activities vs. self-adjustment of dosing regimens.
Methods: Persons with moderate/severe hemophilia A from the EU, US, and Canada, aged 2-65 years (caregivers for PwH < 18y), were given a 25-minute, IRB-approved, web-based questionnaire.
Results: 275 PwH were enrolled (29% children [< 18y], 29% younger adults [18-30y], 41% older adults [≥31y]; 61% severe hemophilia). Most PwH (77%) reported adjusting activities due to hemophilia, on average 2 days/week. Children adjusted their activities less frequently (63%, 1 day/week) than young adults (75%, 2 days/week) and older adults (90%, 3 days/week). Despite frequent adjustment of activities, complete adherence to prescribed regimens was low, reported by only 46% (of 206 responses). Most PwH reported occasionally or frequently missing doses (41%) or adjustment of dosing schedules (ie, adding infusions [19%] or infusing on different schedule [7%]). Children and older adults were more adherent (~50%) than younger adults (35%). Although most attributed their nonaherence to forgetfulness (47%), many reported managing their treatment around activities (39%), based on need (33%), due to time restrictions (26%), or belief that treatment was not necessary (22%).
Conclusions: PwH frequently adjust their dosing schedules, either infusing on a different schedule or adding more infusions to prescribed regimens. Reasons given for nonadherence suggest that as PwH age into adulthood, they increasingly desire autonomy in their lives and wish for a lifestyle that does not revolve around treatment.
To cite this abstract in AMA style:
Nugent D, Llinas A, Khair K, O'Hara J. Self-Adjustment of Prescribed Dosing Regimens and Physical Activity by Persons with Hemophilia (PwH): Findings from the HemACTIVE Patient Survey [abstract]. Res Pract Thromb Haemost. 2020; 4 (Suppl 1). https://abstracts.isth.org/abstract/self-adjustment-of-prescribed-dosing-regimens-and-physical-activity-by-persons-with-hemophilia-pwh-findings-from-the-hemactive-patient-survey/. Accessed September 27, 2023.« Back to ISTH 2020 Congress
ISTH Congress Abstracts - https://abstracts.isth.org/abstract/self-adjustment-of-prescribed-dosing-regimens-and-physical-activity-by-persons-with-hemophilia-pwh-findings-from-the-hemactive-patient-survey/