Results
A total of 130 families completed the barriers measure as part of the QI project. The sample included 62 patients (patient-report only), 37 caregivers (caregiver-report only), and 31 patient/caregiver dyads for a total of 161 participants. Seventy-nine patients (85% of patients) and 32 caregivers (47% of caregivers) reported on adherence to oral anticoagulants, with the remaining participants reporting on adherence to injectable anticoagulants (n = 14 [15%] patients, n = 36 [53%] caregivers).
Roughly three-fourths of patients (n = 67; 72%) and caregivers (n = 53; 78%) endorsed ≥ 1 barrier. On average, patients reported 1.72 barriers (Range = 0-10; Standard Deviation (SD) = 1.92) and caregivers reported 2.03 barriers (Range = 0-8; SD = 2.00). The frequencies of barriers by participant and medication type (oral versus injection) are presented in Figure 1. Within the 31 caregiver-patient dyads, pain was the only barrier that all caregivers and patients agreed on whether it was present or absent (Figure 2).
On average, patients reported taking 96% of doses in the past week (Range = 57-100%; SD = 10%; n = 70) and caregivers reported that their child took 97% of doses in the past week (Range = 71-100%; SD = 7%; n = 62). Of the patients (n = 26) and caregivers (n = 24) asked about adherence in the past month, 50% of patients (n = 13) and 50% of caregivers (n = 12) reported that they missed at least one dose. Among patients, a greater number of barriers was associated with at least one missed dose in the past month (rpb = 0.48, p = .01) but not the percentage of prescribed doses taken (r = -0.20, p = .09). Among caregivers, a greater number of barriers was associated with at least one missed dose in the past month (rpb = 0.52, p = .01) and a lower percentage of prescribed doses taken (r = -0.26, p = .04).