深圳地区慢性髓系白血病患者治疗现况横断面调查研究

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摘要目的调查深圳地区慢性髓系白血病（CML）患者的治疗困扰及需求，并对其影响因素进行分析。方法本研究为横断面调查研究，2019年8月9日—30日对深圳地区正在接受酪氨酸激酶抑制剂（TKI）的CML 患者发放问卷调查，并对数据进行分析。结果共收集有效问卷187 份，105 例（56.1%）为男性，中位年龄37（18～70）岁。对受访者影响最大的非血液学不良反应依次为：乏力55 例（29.4%），水肿54 例（28.9%），皮肤瘙痒33 例（17.6%）；血液学不良反应为贫血81 例（43.3%），白细胞减少39 例（20.9%）。TKI 治疗中对受访者造成的困扰分别为：长期服药所带来的经济负担（73.0%），药物服用过程中所带来的不良反应（65.0%），疾病所带来的心理压力（63.0%）。治疗需求上：对患教会开展频次需求上超过一半受访者希望每6、12 个月开展一次，内容上最希望有CML 上的最新进展、不良反应的管理及CML 患者自身管理经验的分享。结论 CML 患者的结局报告与临床医师的关注点有所偏差，关注CML 患者的治疗困扰及需求，能更有效地进行医患沟通，促进患者自身管理，改善体验，最终改善治疗的总体结果。

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关键词 ：深圳地区, 慢性髓系白血病, 治疗现况, 横断面调查

Abstract：Objective To investigate the treatment perplexity and demand of patients with chronic myeloid leukemia(CML) in Shenzhen, and to analyze its influencing factors. Methods This study was a cross-sectional investigation.From August 9 to 30, 2019, CML patients receiving tyrosine kinase inhibitor (TKI) in Shenzhen were investigated by questionnaire and the data were analyzed. Results A total of 187 valid questionnaires were collected, of which 105(56.1%)were male,with a median age of 37(18-70)years old.The non-hematological adverse reactions that had the greatest impact were: fatigue in 55 cases (29.4%), edema in 54 cases (28.9%), and itchy skin in 33 cases (17.6%). Hematological adverse reactions were anemia in 81 cases (43.3%) and neutropenia in 39 cases (20.9%). The troubles caused by TKI treatment were the financial burden caused by long-term medication (73.0%), adverse reactions caused by drugs(65.0%), and psychological stress caused by illness (63.0%). In terms of the needs of patients′ churches: more than half of the respondents hoped to carry out the survey every 6 and 12 months, and the most desirable contents were the latest progress in CML, the management of adverse reactions and the sharing of CML patients′ own management experience.Conclusion The patient-reported outcome deviates from the clinician′s focus. By focusing on the treatment difficulties and needs of CML patients, preoperative counseling can be conducted more effectively, patient management can be promoted, patient experience can be improved, and the overall outcome of treatment can be improved.

Key words： Shenzhen Chronic myeloid leukemia;Treatment status Cross-sectional investigation

收稿日期: 2020-10-10

基金资助:华中科技大学协和深圳医院2020年度院级课题立项（院内2020008）

作者简介: 王淡瑜（1978-），女，硕士，副主任医师，研究方向：血液系统疾病

引用本文:

王淡瑜；金梦迪；崔海燕；王欣. 深圳地区慢性髓系白血病患者治疗现况横断面调查研究[J]. 中国当代医药, 2021, 28(19): 4-7.
WANG Dan-yu JIN Meng-di CUI Hai-yan WANG Xin. Cross-sectional investigation study on the treatment status of patients with chronic myeloid leukemia in Shenzhen. 中国当代医药, 2021, 28(19): 4-7.

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http://dangdaiyiyao.com/CN/ 或 http://dangdaiyiyao.com/CN/Y2021/V28/I19/4

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