Department of Medicine, Division of Endocrinology, and Center for Endocrine Tumors Leiden, Leiden University Medical Center, Albinusdreef 2, 2333 ZA, Leiden, The Netherlands.
Pituitary. 2023 Jun;26(3):307-317. doi: 10.1007/s11102-023-01309-4. Epub 2023 Apr 4.
To describe quality and outcomes of patient-reported outcome (PRO) measures (PROMs) used in patients with refractory hormone-producing pituitary adenomas, and to provide an overview of PROs in these challenging pituitary adenomas.
Three databases were searched for studies reporting on refractory pituitary adenomas. For the purpose of this review, refractory adenomas were defined as tumors resistant to primary therapy. General risk of bias was assessed using a component approach and the quality of PROM reporting was assessed using the International Society for Quality of Life Research (ISOQOL) criteria.
20 studies reported on PROMs in refractory pituitary adenomas, using 14 different PROMs, of which 4 were disease specific (median general risk of bias score: 33.5% (range 6-50%) and ISOQOL score: 46% (range 29-62%)). SF-36/RAND-36 and AcroQoL were most frequently used. Health-related quality of life in refractory patients (measured by AcroQoL, SF-36/Rand-36, Tuebingen CD-25, and EQ-5D-5L) varied greatly across studies, and was not always impaired compared to patients in remission.
There is a scarcity of data on PROs in the subset of pituitary adenomas that is more difficult to treat, e.g., refractory and these patients are difficult to isolate from the total cohort. The patients' perspective on quality of life, therefore, remains largely unknown in refractory patients. Thus, PROs in refractory pituitary adenomas require adequate analysis using properly reported disease specific PROMs in large cohorts to enable appropriate interpretation for use in clinical practice.
描述用于治疗抵抗性激素分泌性垂体腺瘤患者的患者报告结局（PRO）测量（PROM）的质量和结果，并概述这些具有挑战性的垂体腺瘤中的 PRO。
在三个数据库中搜索报告难治性垂体腺瘤的研究。为了进行本综述，难治性腺瘤被定义为对初始治疗有抵抗的肿瘤。使用综合方法评估一般风险偏差，并使用国际生活质量研究协会（ISOQOL）标准评估 PROM 报告的质量。
20 项研究报告了难治性垂体腺瘤的 PROM，使用了 14 种不同的 PROM，其中 4 种是疾病特异性的（中位数一般风险偏差评分：33.5%（范围 6-50%）和 ISOQOL 评分：46%（范围 29-62%））。SF-36/RAND-36 和 AcroQoL 最常被使用。难治性患者的健康相关生活质量（通过 AcroQoL、SF-36/Rand-36、图宾根 CD-25 和 EQ-5D-5L 测量）在不同研究中差异很大，并且并不总是比缓解期患者受损。
在更难治疗的垂体腺瘤亚组（如难治性）中，PRO 数据稀缺，并且这些患者很难从总队列中分离出来。因此，难治性患者的生活质量观点在很大程度上仍不为人知。因此，需要使用适当报告的疾病特异性 PROM 在大样本中对难治性垂体腺瘤中的 PRO 进行充分分析，以便在临床实践中进行适当解释。
