Shah Shruti N, Yuen Kevin C J, Bonert Vivien, Huang Wenyu, Sisco Jill, Palaty Chrystal, Dancel-Manning Kristen, Agrawal Nidhi
New York University Grossman School of Medicine, New York, NY, United States.
Barrow Neurological Institute, Phoenix, AZ, United States.
Front Endocrinol (Lausanne). 2025 Feb 3;16:1516131. doi: 10.3389/fendo.2025.1516131. eCollection 2025.
A profound mismatch between biological and symptom control in acromegaly creates a high disease burden despite achieving optimal biological control. There is a great need to learn more about the perspectives of patients living with acromegaly.
Acromegaly Community hosted a virtual meeting in January 2021 and prepared a detailed report capturing participants' input on acromegaly symptoms and current and future treatment approaches. The findings of this report are reviewed and summarized in this study.
Fatigue/muscle weakness (92%) and joint pain/arthritis (90%) are the two most common and troublesome symptoms reported by meeting participants. Acromegaly negatively impacts all aspects of daily living: social interaction (49%); exercise (42%); sports/recreational activities (39%); household activities (38%); attending school or job (38%); family relationships (33%); and walking (26%). Anxiety/depression is experienced by 75% of respondents. Eighty-three percent of patients underwent pituitary surgery, and over 71% of patients require medical therapy. Patients desire future improvements in medication efficacy, tolerability, and administration; mental health resources for themselves and their families; and other multimodal approaches to address their physical symptoms, specifically hunger, weight gain, muscle weakness, and joint pains.
Acromegaly patients experience significant physical and psychological burdens despite biochemical control, highlighting the need for comprehensive and patient-centered care. In particular, the impacts on activities of daily living (ADLs) and heavy psychosocial and socioeconomic burdens are striking. We advocate for periodic screening for impacted ADLs, multidisciplinary teams to proactively address these symptoms, and call for further research on under-evaluated aspects of the disease.
尽管在肢端肥大症中实现了最佳的生物学控制，但生物学控制与症状控制之间仍存在严重不匹配，导致疾病负担沉重。非常有必要更多地了解肢端肥大症患者的观点。
肢端肥大症患者社区于2021年1月举办了一次虚拟会议，并编写了一份详细报告，记录了参与者对肢端肥大症症状以及当前和未来治疗方法的意见。本研究对该报告的结果进行了回顾和总结。
疲劳/肌肉无力（92%）和关节疼痛/关节炎（90%）是会议参与者报告的最常见且最困扰人的两种症状。肢端肥大症对日常生活的各个方面都有负面影响：社交互动（49%）；运动（42%）；体育/娱乐活动（39%）；家务活动（38%）；上学或工作（38%）；家庭关系（33%）；以及行走（26%）。75%的受访者有焦虑/抑郁情绪。83%的患者接受了垂体手术，超过71%的患者需要药物治疗。患者希望未来在药物疗效、耐受性和给药方式方面有所改进；为自己和家人提供心理健康资源；以及采用其他多模式方法来解决他们的身体症状，特别是饥饿、体重增加、肌肉无力和关节疼痛。
尽管实现了生化控制，但肢端肥大症患者仍承受着重大的身心负担，这凸显了全面且以患者为中心的护理的必要性。特别是，对日常生活活动（ADL）的影响以及沉重的心理社会和社会经济负担令人震惊。我们主张定期筛查受影响的ADL，多学科团队积极应对这些症状，并呼吁对该疾病评估不足的方面进行进一步研究。
