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垂体和鞍旁疾病的以患者为中心的结局。

Patient-Centered Outcomes with Pituitary and Parasellar Disease.

机构信息

Department of Medicine/Endocrinology, IIB-Sant Pau, Hospital Sant Pau, Research Center for Pituitary Diseases, Barcelona, Spain,

Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER, Unidad 747), ISCIII, Universitat Autònoma de Barcelona (UAB), Barcelona, Spain,

出版信息

Neuroendocrinology. 2020;110(9-10):882-888. doi: 10.1159/000506809. Epub 2020 Feb 27.

DOI:10.1159/000506809
PMID:32101858
Abstract

Over the last 2 decades, advances in the diagnosis and management of pituitary diseases have made it possible to attain an endocrine "cure" in a large proportion of patients. In other words, tumors can be excised or controlled with drugs, mass effects of the lesion on surrounding structures can be solved, and pituitary deficiencies can be substituted with all relevant hormones. While this is considered a satisfactory outcome for health care providers, patients often suffer from an aftermath of prior endocrine dysfunction exposure, with irreversible effects, both physically and psychologically, which have a great impact on their everyday life. Diagnostic delay, often of several years, adds a negative impact on health perception. This affects their social, professional, and family domains and determines their future life. Understanding that this may occur is important, and health care providers should offer information to prepare the patient for this difficult journey, especially in the case of acromegaly, Cushing disease, or hypopituitarism. In order to maintain a good quality of life (QoL) in the long-term, patients need to adapt to this new situation, something that may be difficult, since they often cannot continue with all the activities and rhythm they used to do. Depression is often the consequence of maladaptation to the new situation, leading to impaired QoL.

摘要

在过去的 20 年中,垂体疾病的诊断和治疗方面的进展使得很大一部分患者能够实现内分泌“治愈”。换句话说,可以通过手术切除或药物控制肿瘤,可以解决病变对周围结构的肿块效应,并且可以用所有相关激素替代垂体功能减退。虽然这被认为是医疗保健提供者的满意结果,但患者通常会遭受先前内分泌功能障碍暴露的后遗症,造成身体和心理上的不可逆转影响,对他们的日常生活产生重大影响。诊断延迟通常为数年,这对健康感知产生负面影响。这会影响他们的社交、职业和家庭领域,并决定他们的未来生活。了解这一点很重要,医疗保健提供者应该提供信息,使患者为这段艰难的旅程做好准备,特别是在肢端肥大症、库欣病或垂体功能减退症的情况下。为了长期保持良好的生活质量 (QoL),患者需要适应这种新情况,这可能很困难,因为他们通常无法继续进行以前的所有活动和节奏。适应不良导致抑郁是这种新情况的常见后果,进而导致生活质量受损。

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Endocrine. 2023 Nov;82(2):379-389. doi: 10.1007/s12020-023-03462-z. Epub 2023 Jul 28.
2
Unmet needs in Cushing's syndrome: the patients' perspective.库欣综合征未满足的需求:患者视角
Endocr Connect. 2022 Jun 24;11(7). doi: 10.1530/EC-22-0027. Print 2022 Jul 1.
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Patient-Identified Problems and Influences Associated With Diagnostic Delay of Acromegaly: A Nationwide Cross-Sectional Study.患者识别的问题和与肢端肥大症诊断延迟相关的影响:一项全国性的横断面研究。
Front Endocrinol (Lausanne). 2021 Oct 21;12:704496. doi: 10.3389/fendo.2021.704496. eCollection 2021.