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Hydroxyurea adherence in adolescents and young adults with Sickle Cell Disease: An exploration of barriers to adherence in relation to health-related quality of life.

Fatma S Al-Zhrani*, Solafa H Ghoneim, Manar A Makin, Najd A Alsukhayri, Shahad A Al-Alshaynaw

Background and objectives: Sickle cell disease (SCD) is a hereditary hematologic disorder that affects hemoglobin. With this disease, their health-related quality of life (HRQOL) significantly declines due to disease-related complications. Hydroxyurea is an oral medication recommended for the treatment of youth with SCD, as it is known to improve the HRQOL. However, adherence remains suboptimal. Reported barriers were forgetfulness, inability to obtain the medication, lack of knowledge about hydroxyurea, fear of side effects, and concerns about efficacy. This study aims to was to identify barriers to hydroxyurea adherence and their relationship to adherence rates and (HRQOL) among adolescents and young adults with sickle cell disease in a tertiary center, Jeddah, Saudi Arabia.

Method: A cross-sectional study used for patients with SCD (aged 15-24 years) in 2019. The study measures included Brief Medication Questionnaire (BMQ), Modified Morisky Adherence Scale 8-items (MMAS-8), visual analog scale (VAS), and Patient-Reported Outcomes Measurement Information System (PROMIS). A P value < 0.05 was considered to be statistically significant

Results: A total of 40 participants (40% male, 60% female) had a mean age of 19 years reported the following barriers: negative belief (52.5%), recall barriers (35.0%), and access barriers (22.5%). Patients no significant difference was reported with adherence barriers a MMAS-8 score. However, a (p=0.038) with VAS. However, Patients with negative beliefs demonstrated a significant difference (p=0.038) with respect to VAS.

Conclusion: Patients who reported negative beliefs to hydroxyurea were more than those with recall and access barriers. Negative beliefs also showed strong significance with VAS. In future studies, a larger sample size with patients from all over Saudi Arabia would be recommended for more accurate, generalizable results.