Leiden University Medical Center, Department of Medicine, Division of Endocrinology, Center of Endocrine Tumors Leiden, Albinusdreef 2, 2333 ZA, Leiden, the Netherlands.
Best Pract Res Clin Endocrinol Metab. 2019 Apr;33(2):101309. doi: 10.1016/j.beem.2019.101309. Epub 2019 Aug 2.
Pituitary diseases are rare conditions with severe chronic multiorgan and multisystemic morbidity requiring complex multidisciplinary treatment and usually life-long drug treatment. Most cases are caused by functioning or non-functioning pituitary adenoma. From the patient's perspective, the burden of disease is caused by the tumour itself and associated compression symptoms, interventions, hormone excess and deficiencies, systemic manifestations of these endocrine abnormalities and general psychosocial issues that can manifest in patients with a chronic condition. In this review, patient burden is classified according to classic endocrine syndromes, with burden at diagnosis and after long-term remission, and also within the framework of value-based health care and the conceptual model of wellbeing. The recently developed patient-reported outcome measurement tool that helps to evaluate burden of patients is also discussed.
垂体疾病是罕见的疾病，具有严重的慢性多器官和多系统发病率，需要复杂的多学科治疗，通常需要终身药物治疗。大多数病例是由功能性或非功能性垂体腺瘤引起的。从患者的角度来看，疾病负担是由肿瘤本身以及相关的压迫症状、干预措施、激素过多和缺乏、这些内分泌异常的全身表现以及可能在慢性病患者中表现出来的一般社会心理问题引起的。在这篇综述中，根据经典的内分泌综合征对患者的负担进行分类，包括诊断时和长期缓解后的负担，以及基于价值的医疗保健和幸福感概念模型的框架内的负担。还讨论了最近开发的有助于评估患者负担的患者报告结局测量工具。
