患者对壮症疾病负担的看法:来自社区会议的见解
Shruti N Shah1, Kevin C J Yuen2, Vivien Bonert3
1New York University Grossman School of Medicine, New York, NY, United States.
Frontiers in endocrinology
|February 18, 2025
概括
壮症患者面临着疲劳和关节疼痛等症状的重大负担,影响日常生活. 未来的治疗应侧重于更好的疗效,耐受性和心理健康支持.
科学领域:
- 内分泌学 在内分泌学.
- 患者报告的结果.
- 生活质量生活的质量.
背景情况:
- 巨症带来了严重的疾病负担,通常与生物控制和症状管理之间的不匹配.
- 患者的观点对于了解壮症的全部影响至关重要.
研究的目的:
- 总结患者报告的经验和对壮症症状和治疗的看法.
- 为了确定未得到满足的需求和在壮症护理中所需的改进.
主要方法:
- 2021年1月,由Acromegaly社区进行了一次虚拟会议.
- 一份报告详细介绍了患者对症状和治疗的意见,并进行了审查和总结.
主要成果:
- 疲劳/肌肉虚弱 (92%) 和关节疼痛/关节炎 (90%) 是最常见的症状.
- 巨症显著影响日常生活,包括社会互动,炼和工作.
- 焦虑/抑郁症影响75%的患者;所需的改善包括药物疗效,耐受性,药物管理和心理健康支持.
结论:
- 壮症患者承受着相当大的身体和心理负担,需要以患者为中心的护理.
- 对日常生活活动 (ADL) 和心理社会负担的影响很大.
- 倡导定期进行ADL查,多学科护理,并进一步研究被低估的疾病方面.
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