HABIT Efficacy Trial Intervention Improves Elements of General and Disease-Specific Quality of Life in Youth With Sickle Cell Disease

Background

Whether interventions to improve hydroxyurea adherence in youth with sickle cell disease (SCD) also improve health-related quality of life (HRQoL) has not been determined. We prospectively examined changes in generic and disease-specific HRQoL over a 12-month period in youth who participated in “Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment (HABIT)” randomized controlled multi-site efficacy trial. The HABIT intervention was led by community health workers and augmented by tailored text message reminders.

Methods

Improvements in generic and disease-specific HRQoL were secondary HABIT outcomes. Intervention efficacy and sustainability were measured as changes in HRQoL from Months 0 to 9 and from Months 9 to 12 of the trial, respectively. Data were analyzed for within-group and between-group changes.

Results

Fifty youth, 24 assigned to intervention and 26 to the control group, mean age of 13.3 ± 1.9 years, participated in the trial. There were no differences between groups at study entry. At Month 0, total generic and disease-specific HRQoL scores were 71.2 ± 15.6 and 62.7 ± 19.0, respectively. At 9 months, compared to controls, the intervention group significantly improved generic HRQoL total score (p = 0.04) and two subscales (emotional, p = 0.03, and social, p = 0.01), and one disease-specific HRQoL subscale (treatment, p = 0.006). HRQoL improvements were not sustained at 12 months.

Conclusions

Findings of this study contribute to the evolving understanding of the impact of interventions to improve hydroxyurea adherence on HRQoL in youth with SCD. Further research directed to enhancing intervention sustainability is needed to maintain hydroxyurea adherence and HRQoL improvements to reduce health disparities for youth with SCD.