Meta-Research and Evidence Synthesis Unit, The George Institute for Global Health, New Delhi, India.
The George Institute for Global Health, Faculty of Medicine, UNSW Sydney, Kensington, NSW, Australia.
WHO South East Asia J Public Health. 2022 Jul-Dec;11(2):102-127. doi: 10.4103/WHO-SEAJPH.WHO-SEAJPH_151_21.
Chronic diseases are a major contributor to mortality, morbidity, and socio-economic costs globally, including in India. Quality of life (QoL) is an important patient-centered outcome for chronic disease. Measurement properties of tools for assessing QOL in the Indian context have not been assessed systematically.
A scoping review was conducted, and four major electronic databases were searched. Screening was conducted by at least two independent reviewers, with a third person acting as an arbiter. Data from the retrieved full texts were extracted by one reviewer, with a sample verified by another reviewer to reduce any data extraction errors. A narrative synthesis was done with a focus on measurement properties of tools, including but not limited to internal consistency, inter-rater reliability, test-retest reliability, validity, and acceptability.
Out of 6706 records retrieved, a total of 37 studies describing 34 tools (both generic and disease-specific tools) for 16 chronic conditions were included. Most of the studies were cross-sectional (n = 23). Overall, most tools had acceptable internal consistency (Cronbach's alpha value ≥0.70) and good-to-excellent test-retest reliability (intra-class correlation coefficient = 0.75-0.9), but there was variability in acceptability. In terms of acceptability, seven tools were positively assessed (meeting psychometric property requirements), but all except the World Health Organization QoL tool were disease specific. Many tools have also been tested for local context, and many translated and tested in one or few languages only, thus limiting their usability across the nation. Women were underrepresented in many studies, and tools were not evaluated in other genders. Generalizability to tribal people is also limited.
The scoping review provides a summary of all QOL assessment tools for people with chronic diseases in India. It supports future researchers to make informed decisions for choosing tools. The study highlights the need for more research to develop QOL tools which are contextually applicable and enables the comparability across diseases, people, and regions within India and potentially in the South Asian region.
慢性病是导致全球死亡率、发病率和社会经济成本的主要因素，包括在印度。生活质量（QoL）是慢性病患者关注的重要结果。在印度背景下，用于评估 QoL 的工具的测量特性尚未得到系统评估。
进行了范围综述，检索了四个主要的电子数据库。由至少两名独立审查员进行筛选，第三名作为仲裁人。由一名审查员从检索到的全文中提取数据，另一名审查员验证样本，以减少任何数据提取错误。进行了叙述性综合，重点是工具的测量特性，包括但不限于内部一致性、评分者间信度、重测信度、效度和可接受性。
在检索到的 6706 条记录中，共有 37 项研究描述了 16 种慢性疾病的 34 种工具（通用和疾病特异性工具）。大多数研究为横断面研究（n=23）。总体而言，大多数工具的内部一致性（Cronbach's alpha 值≥0.70）和重测信度（组内相关系数=0.75-0.9）良好，但可接受性存在差异。在可接受性方面，有 7 种工具被积极评估（符合心理测量学特性要求），但除世界卫生组织生活质量工具外，其他均为疾病特异性。许多工具也已在当地环境中进行了测试，并且许多工具仅在一种或几种语言中进行了翻译和测试，因此限制了它们在全国范围内的使用。许多研究中女性代表性不足，且工具未在其他性别中进行评估。对部落人民的普遍性也有限。
范围综述提供了印度慢性病患者生活质量评估工具的综合概述。它支持未来的研究人员做出明智的决策，选择工具。该研究强调需要进行更多研究，以开发适用于印度和南亚地区特定情境的、能够跨疾病、人群和地区进行比较的 QoL 工具。
