Structured telephone-based outreach using nonmedical personnel can improve adherence to comprehensive care in families of children with sickle cell disease.

Comprehensive medical care of patients with sickle cell disease decreases morbidity, mortality, and health care resource utilization. Nonadherence to comprehensive care is a barrier to further improvement in the outcomes of these patients. We investigated the feasibility and acceptability of telephone-delivered structured follow-up, support, and education provided by nonmedical personnel and its impact on adherence to comprehensive measures. A semistructured script was designed that included a series of questions relating to the patient's well-being and health-related behaviors and was administered by a graduate student researcher in genetics. Families of all 202 children followed at Children's Hospital of Pittsburgh were attempted to be contacted at 3 monthly intervals from their last contact. A total of 76% [147] of those called were available and willing to talk. Eighteen months after initiation of the study, the number of patients who had not attended comprehensive care clinic for 2 years or more decreased from 46 (19.7%) to 23 patients (9.9%) (P = 0.0019). Similarly, the proportion of eligible patients who had undergone transcranial Doppler screening within the past 12 months increased from 34 to 49% (P = 0.0501). Structured telephone-based follow-up is feasible and well accepted and can lead to improved adherence with comprehensive care measures.