Disease knowledge and treatment adherence among patients with thalassemia major and their mothers in Taiwan

Abstract

Aims. The current study had three aims: (i) to examine disease knowledge in both thalassemia major patients and their mothers; (ii) to understand the relationships between disease knowledge and treatment adherence in thalassemia major patients; and (iii) to explore the importance of selected factors in predicting patients’ knowledge about thalassemia major. Background. Patients with thalassemia major must be treated with life-long blood transfusions. Evidence suggests that patients with more knowledge/information about their illnesses adhere more readily to treatment schedules. However, there has been little evaluation of knowledge and treatment adherence in thalassemia major patients. Design and methods. A cross-sectional correlational survey design and purposive sampling were used. Thirty-two thalassemia major patients (mean age 17·5 years) and 32 mothers (mean age 40·5 years) were recruited. Results. On a scale ranging from 0–20, the average of the patients’ disease knowledge about thalassemia major was 15·19 and the average of their mothers’ disease knowledge was 16·44. The scores for the patients’ disease knowledge about thalassemia major were positively correlated with follow-up visit adherence (r = 0·690, p < 0·001) and with desferrioxamine infusion adherence (r = 0·791, p < 0·001). 95.6% of variance in patients’ knowledge was explained by a model that included mothers’ knowledge (β = 0·901, p < 0·001), follow-up visit adherence (β = 0·084, p = 0·140) and annual household income (β = 0·042, p < 0·387). Conclusions. The positive association between knowledge and treatment adherence and factors of patients’ knowledge indicate the need for systematic education for patients and caregivers to improve adherence to treatment. Relevance to clinical practice. Improvement of the quality of patient care, reinforcement of medical education and enhanced efforts by clinical staff to provide practical knowledge to patients with thalassemia major should significantly improve patient adherence to treatment.