Treatment adherence and quality of life outcomes in patients with sickle cell disease.

OBJECTIVE To assess the health-related quality of life (HRQL) of patients with sickle cell disease (SCD) and to measure the impact of treatment adherence on disease complication, severity, crisis, and outcome. METHODS This was a cross-sectional study on patients with SCD who attended the Hematology Clinic at King Abdulaziz University Hospital from January 2009 to December 2011. We measured the primary outcome of health-related quality of life (HRQL) using the World Health Organization quality of life assessment instrument (WHOQOL-BREF). Data were collected and analyzed using the Statistical Package for Social Sciences. Analysis of HRQL was carried out along the scoring of WHOQOL-BREF. RESULTS One hundred fifteen patients completed the questionnaire. Eighty-seven patients (75.7%) had severe SCD, while 28 (24.3%) had mild disease. Patients with severe disease had a low HRQL (p=0.002). Pain episodes were the main cause of hospitalization (n=59; 51.3%). Thirty-six of patients (31.3%) who had pain episodes were on regular narcotics and had low HRQL scores (p=0.0001). The HRQL scores significantly decreased as pain levels increased. Patients with delayed treatment or those who were not adherent to treatment showed worse HRQL scores (p=0.001). CONCLUSION Treatment adherence and early intervention in SCD improved HRQL outcomes.