Feasibility of Web-based Technology to Assess Adherence to Clinic Appointments in Youth with Sickle Cell Disease

摘要

Web-based tools to improve clinic attendance have been effectively used in pediatric conditions but have not been tested in pediatric sickle cell disease (SCD). The goal of this pilot study was to assess barriers to clinic attendance and the feasibility of a web-based assessment tool to promote problem-solving around clinic appointments. Study participants included 30 youth with SCD (M=11.7±3.5 years; 57% male; 60% HbSS; 20% HbSC; 17% HB+Thal) and their primary caregivers. Medical chart review indicated that 61% of participants attended at least two SCD clinic appointments in the past year. The primary barrier to clinic attendance was inability to take off from work/school (33%). Regarding feasibility and acceptability, the computerized program was well-received by patients and caregivers, with youth and caregivers reporting a high degree of usefulness and preference for computerized assessment. Results suggest that this innovative approach shows promise and should be tested on a larger sample of youth with SCD.