Health-related quality of life and adherence to hydroxyurea in patients with sickle cell anemia in Saudi Arabia

Sickle cell anemia (SCA) is an inherited chronic condition that can significantly impact patient's health and quality of life (QoL). Hydroxyurea has been shown as a promising treatment choice, but its effectiveness and patient experiences remain sub-explored, particularly in Saudi Arabia. This study aimed to assess various parameters of SCA patient's health, treatment adherence, and QoL. This is an online survey study that was conducted in Saudi Arabia between December 2023 and February 2024. The current online survey targeted adults diagnosed with SCA in Saudi Arabia. The assessment questions included queries about the general health status, satisfaction with time management and life, hydroxyurea treatment duration, adherence to the prescribed dose, perceived improvement of symptoms, frequency of follow-up with healthcare providers, and side effects experienced. A total of 167 patients participated in this study. Most participants reported their general health as good (41.3% described it as good, and 30.5% described it as very good). Enjoyment in life and satisfaction with time management were also prevalent, with 36.5% and 65.3% reporting moderate to extreme satisfaction, respectively. For hydroxyurea treatment, most of them were using it for >3 years (29.3%), and the majority reported a high level of symptom improvement (48.5%). The adherence to the prescribed doses was generally high (70.1%) despite the challenges posed by forgetfulness (15.6%) and side effects (8.3%). Although 86.8% reported an improved general QoL, some patients reported facing the challenges of side effects such as gastrointestinal disturbances (58.0%) and hair loss (62.9%). Nonetheless, some complained of dissatisfaction with the information given by the healthcare providers concerning hydroxyurea (9.0%) and even had challenges in scheduling the doses (18.0%). The results have generally indicated the beneficial effects of hydroxyurea treatment on the QoL of patients with SCA in Saudi Arabia, despite some challenges in adherence and side effects. Efforts should be made to enhance patients education and support systems to optimize patients' treatment outcomes and satisfaction.