Acceptability and Feasibility of a Disease-specific Patient Portal in Adolescents With Sickle Cell Disease

J Pediatr Hematol Oncol. 2019 Oct;41(7):561-567. doi: 10.1097/MPH.0000000000001341.


Objective: To examine the acceptability, feasibility, and efficacy of a health care portal.

Observations: Adolescents and young adults with sickle cell disease were taught how to use sickle cell disease conditions page in MyChart and completed questionnaires at baseline, postintervention (T2, 6 wk after baseline) and after 3 months (T3). In total, 44 participants (M age=18.82, SD=2.72) viewed an average of 58.07 pages from T1 to T2. The portal was highly accepted (90.32%). Efficacy data indicated that portal use was associated with improved patient-provider communication.

Conclusions: Electronic portals are promising tools for improving medical self-management.

Publication types

  • Multicenter Study
  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Anemia, Sickle Cell*
  • Feasibility Studies
  • Female
  • Humans
  • Male
  • Patient Acceptance of Health Care*
  • Patient Portals*
  • Self-Management / methods*
  • Young Adult