OBJECTIVES: (1) To evaluate the feasibility and acceptability of the assessment of health-related quality of life (HRQOL) at home using smartphones with PROMIS® measures, computerized adaptive testing (CAT) approach, integrated into a sickle cell disease (SCD) app; (2) To examine the effect of the frequency of HRQOL assessments on participants' completion rate over 24-week period, every 2-weeks (Group-A) vs. 4-weeks (Group-B); and (3) To explore participants' experience and preferences with the process and the frequency of HRQOL assessment at home.

METHODS: In this pilot randomized trial, participants were randomly assigned to either Group-A (every 2-weeks) or Group-B (every 4-weeks) HRQOL assessment. At enrollment, participants completed demographics and technology comfort questionnaire. At the end of the study, participants completed a semi-structured interview as well as usability and acceptability questionnaires.

RESULTS: Forty-two patients participated (57% males, 91% Black, age 15.7±3 years old) with 94% enrollment rate. Overall, HRQOL assessment completion rate was 65% for patients and 47.9% for parents (P=0.13). Completion rates were significantly higher in Group B [every 4-weeks] compared to Group-A [every 2-weeks] among patients only (71.7% vs. 59.3%, P=0.005) and all participants [patients/parents] (65.4% vs. 45.5%, P<0.001), respectively. Similar findings were seen among parents with trend towards significance (Group-B [58.3%] vs. Group-A [37.5%], P=0.09). Participants who completed assessments using iPads had significantly higher completion rates compared to iPhones (100% vs. 45.2%, P<0.001), respectively. Similar findings were seen among participants who installed SCD-app at home compared to those who did so in clinic (83.3% vs. 47%, P<0.001), respectively. Acceptability and usability scores were high among participants (86-100%).

CONCLUSIONS: The completion of HRQOL assessments at home using PROMIS®-CAT measures integrated into SCD-app is feasible and acceptable. Completion rates were significantly higher with less frequent HRQOL assessment and using iPads. Future longitudinal studies to integrate routine HRQOL assessments in patients with SCD care are warranted.