Iranian Applied Research Center for Public Health and Sustainable Development (IRCPHD), North Khorasan University of Medical Sciences, Bojnurd, Islamic Republic of Iran.
East Mediterr Health J. 2012 May;18(5):539-45. doi: 10.26719/2012.18.5.539.
In the present study, the aim was to explore the quality of life of thalassaemia major (TM) patients according to age, sex, school performance, severity and complications of the disease. A cross-sectional descriptive study was conducted. Quality of life was evaluated by 4 questionnaires; demographic characteristics, the short form 36 health survey (SF-36), Persian version of symptoms checklist-90-revised (SCL-90-R) and life satisfaction index (LSI). 687 (41.08%) of the eligible patients with TM completed the questionnaires. With the SF-36 questionnaire, 329 (47.9%) participants had an excellent level of physical functioning. With the SCL-90-R questionnaire, 446 (64.9%) participants had a global severity index of > 0.7, considered psychiatric patients, 141 (20.5%) patients had GSI between 0.4 and 0.7, considered suspected psychiatric patients and 100 (14.6%) participants had GSI of < 0.4, considered non-psychiatric patients. The mean score of LSI questionnaire was 20.50 (SD 5.95), range 2-37. Beta-TM patients are at risk of psychiatric symptoms and need appropriate psychiatric counselling.
在本研究中,旨在根据年龄、性别、学业成绩、疾病严重程度和并发症探讨重型地中海贫血(TM)患者的生活质量。采用横断面描述性研究。使用 4 份问卷评估生活质量;人口统计学特征、36 项简明健康调查(SF-36)、修订后的症状清单-90 问卷(SCL-90-R)和生活满意度指数(LSI)。687 名符合条件的 TM 患者完成了问卷调查。使用 SF-36 问卷,329 名(47.9%)参与者身体功能处于极佳水平。使用 SCL-90-R 问卷,446 名(64.9%)参与者的全球严重程度指数(GSI)>0.7,被认为是精神病患者,141 名(20.5%)患者的 GSI 在 0.4 到 0.7 之间,被认为是疑似精神病患者,而 100 名(14.6%)参与者的 GSI <0.4,被认为是非精神病患者。LSI 问卷的平均得分为 20.50(SD 5.95),范围为 2-37。β-TM 患者有患精神病的风险,需要进行适当的精神咨询。