Tor Vergata University, Rome, Italy.
Health Sciences Department, University of Florence, Florence, Italy.
Respir Med. 2024 Nov-Dec;234:107829. doi: 10.1016/j.rmed.2024.107829. Epub 2024 Oct 6.
The aim of this review was to identify specific instruments currently available for measuring quality of life in patients with pulmonary arterial hypertension (PAH) and to evaluate their psychometric properties in order to provide robust evidence for their application in clinical practice.
Pulmonary arterial hypertension is a rare pulmonary vascular disorder predominantly affecting women aged 30-50 years. It leads to elevated pulmonary artery pressure, causing increased cardiac workload. Symptoms such as dyspnea and fatigue progressively deteriorate. Given the substantial impact on patient well-being, quality of life assessment is a critical concern. Generic quality of life measures often fail to capture the unique challenges associated with PAH. Therefore, identifying a PAH-specific quality of life instrument is essential for optimising patient management.
A systematic literature review.
A systematic review was performed to assess the psychometric properties of quality of life instruments for PAH patients, following the 2018 Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines. The literature search was conducted across Pubmed, Scopus, CINAHL, EMBASE, and APA PsycINFO databases.
This review included four quality of life instruments: CAMPHOR, LPHQ, emPHasis-10, and PAH-SYMPACT. CAMPHOR and PAH-SYMPACT received a GRADE A rating, while LPHQ and emPHasis-10 were rated GRADE B. Despite some sample size limitations, these instruments demonstrated varying degrees of internal reliability, validity, and content coverage for assessing quality of life in pulmonary arterial hypertension patients.
This review provides an overview of available tools for assessing quality of life in patients with pulmonary arterial hypertension. Critical evaluation of these tools highlights incomplete psychometric assessments and methodological limitations in reference studies. Future research should prioritise more rigorous methodologies to ensure comprehensive psychometric evaluations.
本综述旨在确定目前可用于测量肺动脉高压 (PAH) 患者生活质量的特定工具，并评估其心理测量学特性，以便为其在临床实践中的应用提供有力证据。
肺动脉高压是一种罕见的肺血管疾病，主要影响 30-50 岁的女性。它会导致肺动脉压力升高，从而增加心脏的工作量。呼吸困难和疲劳等症状会逐渐恶化。鉴于其对患者幸福感的重大影响，生活质量评估是一个关键问题。通用生活质量量表通常无法捕捉与 PAH 相关的独特挑战。因此，确定特定于 PAH 的生活质量工具对于优化患者管理至关重要。
系统文献综述。
根据 2018 年基于共识的健康测量仪器选择标准 (COSMIN) 指南，进行了系统文献综述，以评估 PAH 患者生活质量工具的心理测量学特性。文献检索在 Pubmed、Scopus、CINAHL、EMBASE 和 APA PsycINFO 数据库中进行。
本综述包括四种生活质量工具：CAMPHOR、LPHQ、emPHasis-10 和 PAH-SYMPACT。CAMPHOR 和 PAH-SYMPACT 获得 GRADE A 评级，而 LPHQ 和 emPHasis-10 则被评为 GRADE B。尽管存在一些样本量限制，但这些工具在评估肺动脉高压患者生活质量方面表现出不同程度的内部可靠性、有效性和内容涵盖度。
本综述提供了评估肺动脉高压患者生活质量的现有工具概述。对这些工具的批判性评估突出了不完全的心理测量评估和参考研究中的方法学限制。未来的研究应优先考虑更严格的方法，以确保全面的心理测量评估。
