Relationship Between Quality of Life and Health Literacy in Patients with Sickle Cell Disease

Disease management approach is an effective means in genetic disorders, such as sickle cell disease (SCD). This disease is a neglected chronic disease of increasing global health importance. In this process, acquiring knowledge and information related to the disease plays a critical role in self-efficacy and self-care. Therefore, one of the determinants of health and criteria for enhanced quality of life is health literacy.

Therefore, the present study aimed to determine the relationship between the quality of life and health literacy associated with disease management among patients with SCD.

This descriptive-correlational study was conducted on 150 patients with SCD in Ahvaz. These patients have been referred to the thalassemia clinic and the thalassemia ward of Shahid Baghaei-2 Hospital and selected via accessible sampling. The study data were collected using WHOQOL-EREF-26 items and a researcher-made questionnaire about information resources whose reliability and validity were confirmed. Then, the data were entered into the SPSS software and analyzed via descriptive statistics, chi-square, regression, and correlation tests.

The mean age of the participants was 27.56 ± 9.14 years. The most important resource for increasing knowledge was the physician in 83.3% of the patients. In addition, they had acquired the highest amount of knowledge about the causes and symptoms of the disease. Moreover, the highest and lowest mean scores of quality of life were related to physical health (50.80 ± 9.94) and (45.23 ± 19.91) social health dimensions, respectively. The results showed statistically significant differences between the place of residence with the dimension of social health (P = 0.037, b = -11.05) and sources of knowledge enhancement with the dimension of social health quality of life (P = 0.010, b = -14.96).

Since quality of life is a subjective and multifactorial concept, its effective factors have to be explored. The present study results indicated that the patients were eager to acquire knowledge about their disease. The higher the patients’ knowledge level, the higher their ability in disease management, self-care, and social health dimension of quality of life would be.