Politis C
Hellenic Red Cross Blood Transfusion Center, Athens, Greece.
Ann N Y Acad Sci. 1998 Jun 30;850:349-54. doi: 10.1111/j.1749-6632.1998.tb10492.x.
Depending on the severity of thalassemia and the level of health care provided, the thalassemic person may suffer from his/her chronic condition going through the path: disease-->impairment-->disability-->handicap. There is evidence that a high clinical burden is associated with a psychosocial burden for the patients and the family. In Greece, support strategies have developed in the last twenty years to help the thalassemic patient and his/her family. Recent studies in 909 patients show that the life span is prolonged (mean age 27 years), 83% of the patients study or work, 12% are married and 2.3% have set up a family, and 98% utilize the social benefits provided (free education, free entrance to universities, tax allowances, cash benefit, early retirement, etc.). However, psychometric tests performed in 131 patients and 65 matched normal controls over 14 years of age have shown that hostility (extroverted, delusional, total p < 0.001) is an important component of the psychological profile of the patients. The patient's role through their association is strong and undoubtedly has influenced the public's extremely high (93%) awareness of the basic features of the disease and the supportive attitude of the average Greek citizen toward the life style of the thalassemic patient. On the whole, in many thalassemic patients illness has overpowered all other aspects of life. For few, however, life is much more than an illness. Shouldn't this be the message for the patient's psychosocial support strategies?
根据地中海贫血的严重程度以及所提供的医疗保健水平，地中海贫血患者可能会经历这样的病程：疾病→损伤→残疾→障碍。有证据表明，高临床负担与患者及其家庭的心理社会负担相关。在希腊，过去二十年来已制定了支持策略来帮助地中海贫血患者及其家庭。最近对909名患者的研究表明，患者寿命延长（平均年龄27岁），83%的患者学习或工作，12%已婚，2.3%组建了家庭，98%利用所提供的社会福利（免费教育、免费大学入学、税收减免、现金福利、提前退休等）。然而，对131名14岁以上患者和65名匹配的正常对照进行的心理测试表明，敌意（外向、妄想，总体p<0.001）是患者心理特征的一个重要组成部分。患者通过其协会所发挥的作用很强，无疑影响了公众对该疾病基本特征的极高（93%）认知以及普通希腊公民对地中海贫血患者生活方式的支持态度。总体而言，在许多地中海贫血患者中，疾病压倒了生活的所有其他方面。然而，对少数人来说，生活远不止是一场疾病。这难道不应该成为患者心理社会支持策略的信息吗？
