TABLE 2

Risk and Protective Factors for Barriers to Adherence Among Patients With SCD Along Each Step in Ambulatory Medication Use61

StepBarrierRisk FactorProtective Factor and Potential Intervention
1. Prescription givenPhysician not prescribing medicationPhysician concerns about nonadherence as barrier to prescribing.8Education of physicians
Difficult for family to come to clinic.32,40Transportation to clinic provided62
2. Prescription filled at pharmacyPrescription not filledFrequent refills for liquid penicillin due to expiration after 10–14 d.27Use of tablets rather than liquids to allow dispensing of higher number of days’ supply
Failure to (re)fill prescription.32Use of 90-d supply
Insurance problems.32,45Refill reminders
3. Remember to give doseDoses skippedParent does not understand could get sick or die without penicillin,27 beliefs about the value and importance of medicine.40Caregiver knowledge about indications for and use of medicines32,36,39
Competing demands,32,43 family stress.39,40,42Social support for family and child32,36
Treatment limited by travel or other change in daily activities.Parent and child sharing responsibility for medication36,42
Child asleep.
Do not like to use needle.43
Forgetting.40
Adverse effects of medication.43
4. Measure medicationMedication incorrectly measured or preparedParent unsure of dose.Parent dosing support64,65
Liquid medications harder to measure.
Dissolve deferasirox in 8 oz. water.63
5. Child takes medicationMedication difficult to takeChild does not like taste.45
Adherence worse with home oral penicillin compared with injected in clinic.37,38
6. MonitoringInadequate monitoringMonitoring not completed by patient.8
Lack of persistenceDifficulty taking, painful to use,43 no obvious benefit.Each preventive visit associated with 12 more days medication taken41