某地区镰状细胞病患者的知识、态度与实践

IF 0.9 4区 医学 Q4 HEMATOLOGY
Garima Nirmal, Dinesh Pendharkar, Neha Gupta, Abhishek Raj
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引用次数: 0

摘要

背景与目的:镰状细胞病(SCD)是一种与发病率和死亡率相关的遗传性疾病。方法:本横断面研究采用预测问卷对SCD患者/监护人的知识、态度和行为进行评估。结果与讨论:111例参与者中,56例(50.4%)为男性。45名受试者报告SCD为遗传性疾病,只有31名(37%)受试者报告SCD可以预防。14名(70%)已婚患者报告他们的孩子接受过筛查。93名(84%)儿童报告在过去1年内出现过疲劳。其中74人报告在过去一年内没有缺勤/缺课。57名参与者(52%)在过去1年内经历过1至4次疼痛发作,62名参与者(55.86%)因为疼痛发作而去附近的医生那里就诊。94名参与者正在服用常规羟脲类药物,72%的人在过去1个月内没有漏服任何剂量,14.4%的人在过去1个月内漏服1至2剂量。只有19名参与者(17%)知道移植是一种治疗选择。大多数(78%)报告在前一年不定期接受血液和其他检查。结论:患者/监护人对疾病性质、预防措施、移植治疗方案及家属筛查的知识和态度较低。同时,大多数人都受过教育。与世界数据相比,羟基脲的依从性非常好。病人和家属的教育和咨询是当前的需要。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Knowledge, Attitude, and Practice of Patients Suffering From Sickle Cell Disease in an Endemic Zone.

Background and objective: Sickle cell disease (SCD) is a genetically inherited disorder that is associated with morbidity and mortality.

Methods: This cross-sectional study was conducted on patients diagnosed with SCD to evaluate the knowledge, attitude, and practice of patients/guardians using a pretested questionnaire.

Results and discussion: Of the 111 participants, 56 (50.4%) were male. Forty-five participants reported SCD as a hereditary disease, and only 31 (37%) subjects reported that SCD could be prevented. Fourteen (70%) married patients reported that their children had been screened. Ninety-three (84%) children reported fatigue in the past 1 year. Seventy-four of them reported no absence from work/school in the past 1 year. Fifty-seven participants (52%) experienced 1 to 4 episodes of pain in the past 1 year, 62 and the majority (55.86%) of them visited a nearby doctor for the pain episode. Ninety-four participants were taking regular hydroxyurea as medication, and 72% had not missed any dose in the past 1 month, while 14.4% missed 1 to 2 doses in the past 1 month. Only 19 participants (17%) were aware that transplantation was a curative option. The majority (78%) reported undergoing blood and other investigations irregularly in the preceding year.

Conclusions: The knowledge and attitude of patients/guardians regarding the nature of the disease, preventive measures, curative options for transplantation, and screening of family members are low. At the same time, most people are educated. In contrast to the world data, adherence to hydroxyurea is extremely good. Patient and family education and counseling are the needs of the hour.

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来源期刊
CiteScore
1.90
自引率
8.30%
发文量
415
审稿时长
2.5 months
期刊介绍: ​Journal of Pediatric Hematology/Oncology (JPHO) reports on major advances in the diagnosis and treatment of cancer and blood diseases in children. The journal publishes original research, commentaries, historical insights, and clinical and laboratory observations.
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