Session: 114. Sickle Cell Disease, Sickle Cell Trait, and Other Hemoglobinopathies, Excluding Thalassemias: Clinical and Epidemiological: Poster I
Hematology Disease Topics & Pathways:
Sickle Cell Disease, Education, Hemoglobinopathies, Diseases
Patient Activation Measure-13 (PAM-13) questionnaire was administrated at baseline and at 2 months, whereas mHealth App Usability Questionnaire (MAUQ) was evaluated at 2 months of use.
In SCD patients using SCD MED ALERT, the mean PAM score was 3.02 (0.32) at the baseline and 3.23 (0.33) at 2 months of use (p<0.001). The total PAM-score increased from 39.3 (4.2) to 42.0 (4.3) (p<0.001). When we considered SCD patients under medical treatments, the PAM-score at the baseline showed a positive association with patients on crizalizumab plus hydroxyurea (HU) (p=0.015), suggesting a higher sense of self-efficacy in SCD patients under combination treatment than on HU alone: PAM-score 44.4 (3.4) vs 38.7 (3.9), p=0.0034. We noted a positive association of the difference of PAM-score for patients on chronic erythroexchange (p=0.036). MAUQ questionnaire showed a positive consensus of SCD patients on the use of application with a mean score of 6.0 (0.6). Overall, 31/44 (70%) answering patients used the app to report VOC crises. There was no effect of gender or of chronic pain treatment on either PAM-score at baseline and after SCD MED ALERT use. SCD patients contributed with the following main suggestion to improve SCD MED ALERT app: “medication reminders and trackers for chronic treatments” (n=23), “information material on the disease” (n=10) possibility of communicating with other patients (n=10) and “possibility of communicating with healthcare personnel (n=9).
Our study shows that SCD MED ALERT app increases patient sense of self-efficacy and pro-activity in home pain management during acute VOCs. SCD MED ALERT app allowing the early treatment of sickle cell related of pain, might contribute to the empowerment of patients with SCD.
Disclosures: Pinto: Vertex: Membership on an entity's Board of Directors or advisory committees; BMS: Membership on an entity's Board of Directors or advisory committees. Origa: BMS: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau.