摘要
目的探讨原发免疫性血小板减少症(ITP)对患者生活质量和情绪健康的影响及医患双方对治疗方法的认知。方法该项研究为I-WISh国际调研的中国亚组分析,共102名医生和286例ITP患者参与调研,调研结果采用描述性分析。结果疲劳和对血小板计数不稳定的焦虑是ITP患者在治疗后的主要症状,而医生对患者疲劳、焦虑症状的报告不充足。超过90.0%的患者认为ITP对他们的工作或学习、日常事务、体能、运动能力和性生活产生了负面影响。60.8%(174/286)的患者认为ITP对情绪影响较大,其中对血小板计数波动(74.8%,214/286)、疾病本身(71.7%,205/286)及病情恶化(68.9%,197/268)的担忧占主要方面,医生也给出了类似的评价。医患双方均认为减少自发出血、维持安全稳定的血小板水平和改善生活质量是ITP最重要的三个治疗目标,其中降低出血风险是影响医生治疗决策的首要因素。此外,医生认为糖皮质激素(54.9%,56/102)最有可能使患者达到持续有效的治疗目标,而患者对血小板生成素受体激动剂(TPO-RA)的反馈最好,且83.9%(240/286)的患者对TPO-RA的疗效表示满意。结论ITP对患者生活质量和情绪存在巨大影响,但中国医生对ITP患者疲劳和焦虑症状认识不足。在ITP诊治过程中医患应加强沟通,共同决策,以制定合适的个体化治疗方案。
Objective To explore the impact of primary immune thrombocytopenia(ITP)on patient's quality of life and emotional well-being,and both the physician and the patient's perception of the treatment.Methods This study was a Chinese Subgroup analysis of I-WISh survey,including 102 physicians and 286 ITP patients invited to complete the survey.A descriptive analysis of the results of the physician-patient survey was conducted in three parts:symptoms,impact of ITP on quality of life and emotion,and treatment perception.Results Fatigue and anxiety about unstable platelet counts were the main symptoms after treatment.Physicians reported inadequate frequency of anxiety and fatigue.In terms of quality of life,over 90.0%of patients thought that ITP had a negative impact on their working life/studies,daily tasks,energy,capacity to exercise,and sexual life.With regard to emotion,60.8%(174/286)patients thought that ITP had a greater impact on overall emotion,concerns about the fluctuation in platelet level(74.8%,214/286),disease itself(71.7%,205/286)and disease progression(68.9%,197/286)were the common issues,which were similar to the physicians'evaluations.Both physicians and patients agreed that reducing spontaneous bleeding,maintaining a healthy blood count and improving quality of life were the top three important treatment goals.Physicians considered reducing bleeding risk as the most important factor for decision making.Physicians believed that patients receiving glucocorticoid(54.9%,56/102)were most likely to succeed in achieving sustained response while patients had the best response to thrombopoietin receptor agonist(TPO-RA)treatment,with about 83.9%(240/286)being satisfied with the overall effectiveness of TPO-RA.Conclusions Physicians in the I-WISh Chinese subgroup had low awareness on patients'fatigue and anxiety.The quality of life and emotion of patients were significantly negatively affected by ITP.There are differences in the selection of treatments between physicians and patients,suggesting that physicians shoul
作者
王茹婷
刘新光
侯宇
侯明
Wang Ruting;Liu Xinguang;Hou Yu;Hou Ming(Department of Hematology,Qilu Hospital,Shandong University,Jinan 250012,China)
出处
《中华血液学杂志》
CAS
CSCD
北大核心
2021年第5期369-375,共7页
Chinese Journal of Hematology
关键词
免疫性血小板减少症
生活质量
情绪影响
治疗认知
Primary immune thrombocytopenia
Quality of life
Emotional impact
Treatment cognition
