Objective: 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.
Methods: This cross-sectional mixed-methods study involved semi-structured interviews, surveys, and focus groups of adolescents and adults with SCD. We evaluated interest, preferences, and anticipated benefits or barriers of a patient-centered adaptation of SCD practice guidelines; prospective technology uses for health; and barriers to technology utilization.
Results: Forty-seven individuals completed surveys and interviews, and 39 participated in three separate focus groups. Most participants (91%) were unaware of SCD guidelines, but almost all (96%) expressed interest in a guidelines application, identifying benefits (knowledge, activation, individualization, and rewards), and barriers (poor information, low motivation, and resource limitations). Current technology health uses included information access, care coordination, and reminders about health-related actions. Prospective technology uses included informational messaging and timely alerts. Barriers to technology use included lack of interest, lack of utility, and preference for direct communication.
Conclusions: This study's findings can inform the design of clinical practice guideline applications, suggesting a promising role for technology to engage patients, facilitate care decisions and actions, and improve outcomes.