Improving Penicillin Adherence in Pediatrics with Sickle Cell Disease Through Evidence Based Caregiver Education
Philomena Okonkwo, Zahra Al Khuridah, Lewis L HsuAbstract
Background
Landmark evidence showed that early initiation of prophylactic penicillin in young children with sickle cell disease (SCD) reduces Streptococcus pneumoniae bacteremia and death. Penicillin is the first medication initiated after confirmation of diagnosis of SCD in babies detected by newborn screening. Hence, adherence to penicillin prophylaxis is a major goal in pediatric care of SCD in all national clinical practice guidelines and public health policies. Nonadherence among this group has been a problem especially given that during infancy the patients are usually well appearing. Published reviews describe that the overall adherence for chronic medications given to pediatric patients with SCD are 55-74%. Knowledge gaps among caregivers were found to be a leading reason for low adherence to penicillin prophylaxis. The literature identifies strategies that encouraged medication adherence in pediatric patients with sickle cell disease, highlighting education as the major intervention for adherence. However, the gap in adherence to penicillin prophylaxis remains an ongoing issue with no clear resolution. Objectives: This study aims to assess knowledge gaps about penicillin prophylaxis among caregivers using questionnaires, penicillin prescription refill records and caregivers’ self-reports. The use of quality improvement cycles to determine the best educational interventions.
Methods
This is a quality improvement project conducted at the pediatric sickle cell disease clinic at a midwestern urban academic medical center. Target population is children with SCD of any genotype, aged 0 to 3 years, identified from the clinic roster and appointment schedule, plus their parents or other family caregivers. The EPIC electronic medical record shows penicillin prescription refills in the pharmacy dispensing record. The benchmark for medication adherence is Medication Possession Ratio 80%, which is a standard definition in the pharmacy literature. Knowledge assessment questionnaires will be mailed to the family home address. Planned educational interventions include one on one interviews, phone calls, and picture grams. Changes in adherence will be measured using medication history to snapshots and caregiver self-report.
Results
A review of patients with SCD born between January 1st, 2023, to January 1st, 2026, conducted using a pharmacy medication dispensary report from the EPIC electronic health record, found 9 females and 8 males eligible. The total of 17 patients had orders for penicillin, 52 % were consistent with penicillin (PCN) refills while 48% of patients had Medication Possession Ratio below 80% in medication refills. With the use of telephone interviews, a knowledge gap was confirmed as the main barrier for non-compliance among caregivers. The first educational intervention is one-to-one education (face to face and telephone). Initial findings show an improvement in understanding for 9 caregivers and subsequent 33 % increase in medication compliance.
Conclusions
To date, caregivers have reported positive verbal feedback following direct education at clinic visits regarding the importance of penicillin adherence and its role in lowering the risk of bacterial infections. Preliminary findings show promise,with one-to-one education triggering medication refills in three families. Refills were noted from the pharmacy medication dispensary report from the EPIC electronic health record. Although the study is ongoing, early result leans towards positive impact of caregiver education in achieving greater adherence with the use of penicillin prophylaxis among pediatric with SCD The study is limited by a small number of patients and caregivers selected and by the short study period. Further studies with a larger age range are required to substantiate the effectiveness of caregiver education as an auspicious intervention.