Patient activation measure among transfusion-Dependent patients with hemoglobinopathies

CONTEXT: Patient's sense of control over their disease management (patient activation) is reported to be associated with better disease outcomes in many chronic conditions. AIMS: The aim of this study is to assess patient activation levels among adult transfusion-dependent patients with hemoglobinopathies. The secondary aims were to determine whether the level of patient activation is associated with different disease outcomes and whether an association exists between higher levels of activation and specific patient characteristics. SETTINGS AND DESIGN: Participants were recruited from the day-care unit in the period between November 2019 and April 2021. Patients who agreed to participate were asked to provide demographic and socioeconomic data and complete the patient activation measure (PAM-10) in Arabic. Hospital records were reviewed for the retrieval of clinical data. RESULTS: The total number of participants was 84. The mean PAM score was 52.90 ± 10. Of all the participants, 21 (25%) had very low levels of activation (Level 1), 38 (45.2%) were categorized as Level 2, 21 (25%) were categorized as Level 3, while 4 (4.8%) were categorized as Level 4 (highest activation level). Disease outcomes were not different among patients by level of patient activation. CONCLUSIONS: Our results show that transfusion-dependent patients with hemoglobinopathies have low levels of activation. No association was found between patient activation and clinical disease outcomes.