{"title":"肢端肥大症患者的生活质量:范围综述。","authors":"Wei Wang, Ting Yang, Qinghua Huang","doi":"10.1186/s13023-024-03246-2","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":19651,"journal":{"name":"Orphanet Journal of Rare Diseases","volume":null,"pages":null},"PeriodicalIF":3.4000,"publicationDate":"2024-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11225403/pdf/","citationCount":"0","resultStr":"{\"title\":\"Quality of life in patients with acromegaly: a scoping review.\",\"authors\":\"Wei Wang, Ting Yang, Qinghua Huang\",\"doi\":\"10.1186/s13023-024-03246-2\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>A scoping review was conducted using the PRISMA-ScR guideline. 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引用次数: 0
摘要
目的:通过综述生活质量的社会心理因素、生活质量测量方法以及针对生活质量的辅助干预措施,评估有关肢端肥大症患者生活质量(QoL)的现有证据:采用 PRISMA-ScR 指南进行了范围界定综述。我们检索了从开始到 2023 年 8 月 21 日的六个英文数据库(PubMed、Embase、CINAHL、Scopus、Web of Science 和 Cochrane Library)。我们纳入了在任何环境(背景)下针对肢端肥大症患者(人群)的社会心理因素和辅助干预措施的观察性研究。我们详细描述了纳入研究的设计特点、社会心理因素、测量方法、干预措施的细节和结果: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。与肢端肥大症患者生活质量相关的社会心理因素共有十类。抑郁和焦虑是最常见的社会心理因素。使用了七种不同的有效 QoL 测量方法。AcroQoL是最常见的测量方法。确定了两类针对 QoL 的辅助干预措施,包括心理干预和运动干预:我们的范围界定综述相当清晰地描述了肢端肥大症患者 QoL 的研究现状。然而,本综述也强调,今后需要加深对 QoL 和心理社会因素的理解,并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经历。此外,还需要更多潜在的临床辅助干预措施来改善肢端肥大症患者的 QoL。
Quality of life in patients with acromegaly: a scoping review.
Purpose: 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.
Methods: 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.
Results: 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.
Conclusions: 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.
期刊介绍:
Orphanet Journal of Rare Diseases is an open access, peer-reviewed journal that encompasses all aspects of rare diseases and orphan drugs. The journal publishes high-quality reviews on specific rare diseases. In addition, the journal may consider articles on clinical trial outcome reports, either positive or negative, and articles on public health issues in the field of rare diseases and orphan drugs. The journal does not accept case reports.