Nursing Department, The Second Affiliated Hospital Zhejiang University School of Medicine, Zhejiang, China.
Orphanet J Rare Dis. 2024 Jul 4;19(1):251. doi: 10.1186/s13023-024-03246-2.
To evaluate the available evidence regarding the quality of life (QoL) in patients with acromegaly, by synthesizing the psychosocial factors of QoL, QoL measures, and complementary interventions targeting QoL.
A scoping review was conducted using the PRISMA-ScR guideline. We searched six English databases (PubMed, Embase, CINAHL, Scopus, Web of Science, and the Cochrane Library) from the inception to August 21, 2023. We included observational studies involving psychosocial factors and complementary interventions targeting QoL (concept) in patients with acromegaly (population) in any setting (context). The design characteristics, psychosocial factors, measures, details of interventions, and outcomes of included studies were described in detail.
Twenty-one studies were identified, including sixteen cross-sectional studies and five interventional studies. Ten categories of psychosocial factors that are associated with QoL in acromegaly. Depression and anxiety were the most frequent psychosocial factors. Seven different validated QoL measures were used. AcroQoL was the most common measure. Two categories of complementary interventions targeting QoL were identified including psychological and exercise interventions.
Our scoping review provides a reasonably clear picture of the current research status of QoL in acromegaly. However, this review also highlights the need to deepen understanding of QoL and psychosocial factors in the future, as well as conduct longitudinal research and qualitative research to clarify the changing trends of psychosocial factors and specific experiences of patients. Further, more potential clinical complementary interventions are needed to improve QoL for patients with acromegaly.
通过综合分析肢端肥大症患者生活质量（QoL）的心理社会因素、QoL 测量方法以及针对 QoL 的补充干预措施，评估肢端肥大症患者 QoL 的现有证据。
采用 PRISMA-ScR 指南进行范围综述。我们检索了六个英文数据库（PubMed、Embase、CINAHL、Scopus、Web of Science 和 Cochrane Library），检索时间从建库至 2023 年 8 月 21 日。我们纳入了在任何环境（背景）下涉及肢端肥大症患者（人群）心理社会因素和针对 QoL 的补充干预措施（概念）的观察性研究。详细描述了纳入研究的设计特征、心理社会因素、测量方法、干预措施细节和结果。
共确定了 21 项研究，包括 16 项横断面研究和 5 项干预性研究。有 10 类与肢端肥大症患者 QoL 相关的心理社会因素。抑郁和焦虑是最常见的心理社会因素。使用了 7 种不同的经过验证的 QoL 测量方法。其中 AcroQoL 是最常用的测量方法。确定了两类针对 QoL 的补充干预措施，包括心理干预和运动干预。
本范围综述提供了肢端肥大症患者 QoL 现有研究状况的相对清晰的描述。然而，该综述也突出表明，未来需要更深入地了解 QoL 和心理社会因素，开展纵向研究和定性研究，以明确心理社会因素的变化趋势和患者的具体体验。此外，还需要更多潜在的临床补充干预措施来改善肢端肥大症患者的 QoL。
