Lee Ya-Ling, Lin Dong-Tsamn, Tsai Shu-Feng
School of Nursing, National Taiwan University and Supervisor, Department of Nursing, National Taiwan University Hospital, Taipei, Taiwan.
J Clin Nurs. 2009 Feb;18(4):529-38. doi: 10.1111/j.1365-2702.2007.02150.x.
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.
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.
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.
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 (beta = 0.901, p < 0.001), follow-up visit adherence (beta = 0.084, p = 0.140) and annual household income (beta = 0.042, p < 0.387).
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.
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.
本研究有三个目的：（i）调查重型地中海贫血患者及其母亲的疾病知识；（ii）了解重型地中海贫血患者的疾病知识与治疗依从性之间的关系；（iii）探讨选定因素在预测患者对重型地中海贫血知识方面的重要性。
重型地中海贫血患者必须接受终身输血治疗。有证据表明，对自身疾病了解/信息更多的患者更容易遵守治疗计划。然而，对重型地中海贫血患者的知识和治疗依从性评估较少。
采用横断面相关性调查设计和目的抽样法。招募了32名重型地中海贫血患者（平均年龄17.5岁）和32名母亲（平均年龄40.5岁）。
在0至20分的量表上，患者对重型地中海贫血的疾病知识平均分为15.19分，其母亲的疾病知识平均分为16.44分。患者对重型地中海贫血的疾病知识得分与随访依从性呈正相关（r = 0.690，p < 0.001），与去铁胺输注依从性呈正相关（r = 0.791，p < 0.001）。患者知识的95.6%的方差由一个模型解释，该模型包括母亲的知识（β = 0.901，p < 0.001）、随访依从性（β = 0.084，p = 0.140）和家庭年收入（β = 0.042，p < 0.387）。
知识与治疗依从性之间的正相关以及患者知识的因素表明，需要对患者和护理人员进行系统教育，以提高治疗依从性。
改善患者护理质量、加强医学教育以及临床工作人员加大努力向重型地中海贫血患者提供实用知识，应能显著提高患者的治疗依从性。
