Supplementary file 2_Patient-reported outcome measures for anticipatory grief: a systematic review.docx

BackgroundAnticipatory grief (AG) refers to the experience of grief symptoms by patients or their caregivers in response to life-threatening illnesses, even before an actual loss has occurred. The selection of valid and reliable patient-reported outcome measures (PROMs) to assess AG is essential for early identification, effective intervention, and the reduction of prolonged grief disorder. This study summarizes psychometric properties of AG PROMs and recommends the most effective PROMs.
MethodsNine databases (PubMed, EMBASE, Web of Science, CINAHL, Cochrane Library, PsycINFO, CNKI, Wanfang, China Biology Medicine Database) were searched from inception to December 2024. Search terms include “preparatory” or “preparedness” or “pre-loss” or “pre-death” or “anticipatory,” “grief” or “mourn” or “bereave,” “surveys and questionnaires” or “assess” or “instrument” or “measure” or “inventory” or “scale” or “interview.” Eligible studies included those reporting the development or validation of any AG assessment for patients with chronic illnesses and their informal caregivers. Extracted psychometric properties encompassed content validity, structural validity, internal consistency, cross-cultural validity, reliability, measurement error, criterion validity, hypothesis testing, and responsiveness. We conducted a reliability generalization meta-analysis of internal consistency (Cronbach’s alpha) for identical AG PROMs across different studies. Quality assessment, measurement property ratings, synthesis, and modified grading of evidence were conducted following the COSMIN methodology for systematic reviews.
ResultsA total of 20 studies comprising of 13 AG PROMs were included. 2 PROMs were designed for patient assessment, and 11 targeted informal caregivers. PG-12 demonstrated high-quality evidence in assessing informal caregiver AG, with satisfactory content validity and internal consistency, supporting grade A. MM-CGI-CCPS showed insufficient evidence for structural validity and internal consistency, warranting grade C; the remaining tools are suggested as grade B due to limited evidentiary support.
ConclusionThis review confirms PG-12 as a grade A PROM for measuring AG in informal caregivers. However, no grade A PROMs were identified for assessing AG in patients. Future studies are needed to further validate the methodological quality and measurement properties of PROMs used in patient populations. Significant concerns remain regarding other existing PROMs, particularly in content validity, structural validity, cross-cultural adaptation, measurement error, and reliability, which increase uncertainty in available evidence.
Systematic review registrationhttps://www.crd.york.ac.uk/PROSPERO/view/CRD42024624205, identifier (CRD42024624205).

背景：预期性悲伤（Anticipatory Grief, AG）指患者或其照护者在面临致命性疾病时，甚至在实际丧失发生前就已出现的悲伤症状体验。筛选有效且可靠的患者报告结局指标（Patient-Reported Outcome Measures, PROMs）以评估AG，对于早期识别、实施有效干预以及降低持续性悲伤障碍的发生风险至关重要。本研究总结了AG相关PROMs的心理测量学属性，并推荐了临床应用价值最高的PROMs。
方法：本研究检索了9个数据库，包括PubMed、EMBASE、Web of Science、CINAHL、Cochrane Library、PsycINFO、中国知网（CNKI）、万方数据、中国生物医学文献数据库，检索时限为建库至2024年12月。检索词涵盖“预前”“准备性”“丧前”“临终前”或“预期性”、“悲伤”“哀悼”或“居丧”相关词汇，以及“调查与问卷”“评估工具”“测量量表”“访谈”类词汇。纳入研究需报道针对慢性病患者及其非正式照护者的任意AG评估工具的开发或验证工作。本研究提取的心理测量学属性包括内容效度、结构效度、内部一致性、跨文化效度、信度、测量误差、效标关联效度、假设检验及反应性。针对不同研究中同款AG相关PROMs，我们开展了内部一致性（克朗巴赫α系数，Cronbach’s alpha）的信度汇总meta分析。研究遵循系统评价的COSMIN方法学标准，完成了质量评价、测量属性评级、证据综合及证据等级调整。
结果：本研究共纳入20项相关研究，涉及13种AG相关PROMs。其中2种PROMs专为患者评估设计，剩余11种均针对非正式照护者。PG-12在评估非正式照护者的AG时展现出高质量证据支持，其内容效度与内部一致性表现优异，被评为A级。MM-CGI-CCPS的结构效度与内部一致性证据不足，被评为C级；其余工具因证据支持有限，被评为B级。
结论：本综述确认PG-12是用于评估非正式照护者AG的A级PROM。但目前尚未发现可用于评估患者AG的A级PROM。未来仍需开展相关研究，进一步验证针对患者群体的PROMs的方法学质量与测量属性。现有其他PROMs仍存在诸多显著问题，尤其在内容效度、结构效度、跨文化调适、测量误差及信度方面，这进一步增加了现有证据的不确定性。
系统评价注册信息：https://www.crd.york.ac.uk/PROSPERO/view/CRD42024624205，标识符为CRD42024624205。