Department of Medicine, Division of Endocrinology, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, the Netherlands; Center for Endocrine Tumors Leiden (CETL), Center for Pituitary Care, Leiden University Medical Center, Albinusdreef 2, 2333 ZB Leiden, the Netherlands.
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, the Netherlands; Center for Endocrine Tumors Leiden (CETL), Center for Pituitary Care, Leiden University Medical Center, Albinusdreef 2, 2333 ZB Leiden, the Netherlands; Basalt Rehabilitation Center, Vrederustlaan 180, 2543 SW Den Haag, the Netherlands.
Endocrinol Metab Clin North Am. 2022 Dec;51(4):709-725. doi: 10.1016/j.ecl.2022.04.004. Epub 2022 Sep 22.
Acromegaly has a substantial negative impact on quality of life (QoL). This review aims to discuss the impact of acromegaly on QoL from the clinical perspective as well as from the patient perspective. Furthermore, it aims to evaluate the use of patient-reported outcome measures (PROMs) in acromegaly and how PROMs aid decision-making. The recommendations presented in this review are based on recent clinical evidence on the impact of acromegaly on QoL combined with the authors' own clinical experience treating patients with acromegaly. We recommend that a patient-centered approach should be considered in treatment decisions, integrating conventional biochemical outcomes, tumor control, comorbidities, treatment complications, and PROMs, including QoL measures. This more integrated approach seems effective in treating comorbidities and improving patient-reported outcomes and is critical, as many patients do not achieve biochemical or tumor control and comorbidities, impairment in QoL may not remit even when full biochemical control is achieved.
肢端肥大症对生活质量（QoL）有重大负面影响。本文旨在从临床角度和患者角度讨论肢端肥大症对 QoL 的影响。此外，还旨在评估患者报告的结果测量（PROMs）在肢端肥大症中的应用，以及 PROMs 如何辅助决策。本综述中提出的建议基于肢端肥大症对 QoL 影响的最新临床证据，以及作者治疗肢端肥大症患者的临床经验。我们建议在治疗决策中考虑以患者为中心的方法，将常规生化结果、肿瘤控制、合并症、治疗并发症和 PROMs（包括 QoL 测量）整合在一起。这种更综合的方法似乎对治疗合并症和改善患者报告的结果有效，因为即使在实现完全生化控制的情况下，许多患者仍未达到生化或肿瘤控制以及合并症，即使实现了完全的生化控制，QoL 的损害也可能不会缓解。
