Adherence to hydroxyurea (HU) is a significant modifying factor in sickle cell vaso-occlusive pain. We conducted a study using an electronic medication container-monitor-reminder device (GlowCap™) to track adherence and determine whether use of this device affected rates of HU adherence. Subjects were regular attendees to our clinic. They were given a 37-item questionnaire and were asked to use a GlowCap containing HU. When the device cap is opened, it makes a remote "medication taken" record. The device also provides usage reminder in the form of lights and alarm sounds if the cap opening is delayed. Nineteen subjects participated in the survey, and 17 in the intervention phase. Of the 17, 12 had reliable adherence data. Seventeen caregivers of patients and two patients completed the survey. Two most common barriers to adherence identified were lack of reminders and absence of medicine home delivery. The intervention component of this study, which used both the electronic (GlowCap) method and medication possession ratio showed that the median adherence rate for the 12 patients evaluated was 85 %. The GlowCap device accurately kept a record of adherence rates. This device may be an effective tool for increasing HU medication adherence.
The Pediatric Symptom Checklist (PSC) is used to screen for social/emotional difficulty in youth. It is completed by either a parent (PSC) or patient (Y-PSC). The Achenbach Child Behavior Checklist (CBCL) and Youth Self-Report (YSR) are parent-and self-completed social/emotional assessment tools that are well validated, but the less validated PSC and Y-PSC's availability, convenience, and cost are advantageous for busy clinics. Objective: We examined the appropriateness of using the PSC and Y-PSC to screen adolescents with sickle cell disease for social/ emotional difficulty. Method: Patients with sickle cell disease (n=14; 7 female; mean age ± SD= 4.1 ± 1.8) completed the Y-PSC and YSR, while their parents completed the PSC and CBCL. Rates of risk for social/emotional difficulty were compared between parent-completed forms (PSC versus CBCL), and between patient-completed forms (Y-PSC and YSR). Agreement in the presence or absence of risk was explored as well. Results: Six youth had total scores exceed cutoffs for a positive screen. Parent-completed questionnaires each identified 4 youth; the YSR and Y-PSC identified 4 and 2 respectively. However, no 2 tools identified the exact same combination of youth and no single informant or tool captured all youth with risk for social/emotional difficulty. Conclusion: Our results, though preliminary, indicate that no single informant or screening tool sufficiently captures risk for social/emotional difficulty in the adolescent sickle cell population. Instead, a multi-informant, multi-method approach to screening for social/ emotional difficulty in adolescents with sickle cell disease is encouraged until additional research can illuminate an alternative.
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