Utrankar A, Mayo-Gamble TL, Allen W, Novak L, Kassim AA, Bonnet K, Schlundt D, Murry VM, Jackson GP, DeBaun M, Cronin RM. Technology use and preferences to support clinical practice guideline awareness and adherence in individuals with sickle cell disease. Journal of the American Medical Informatics Association : JAMIA. 2018 Aug 1;25(25). 976-988. PMID: 29741695 [PubMed] PMCID: PMC6077809
Sickle cell disease (SCD) is a chronic condition affecting over 100 000 individuals in the United States, predominantly from vulnerable populations. Clinical practice guidelines, written for providers, have low adherence. This study explored knowledge about guidelines; desire for guidelines; and how technology could support guideline awareness and adherence, examining current technology uses, and user preferences to inform design of a patient-centered guidelines application in a chronic disease.