Objective

In order to better incorporate the patient’s perspective in medical decision making, core outcome sets (COS) are being defined. In the field of abdominal aortic aneurysm (AAA), efforts to capture the patient’s perspective focus on generic quantitative quality of life (QoL) scales. The question arises whether these quantitative scales adequately reflect the patient’s perspective on QoL, and whether they can be included in the QoL aspect of COS. A scoping review of QoL assessment in the context of elective AAA repair was undertaken.

Data Sources

PubMed, Embase, Web of Science, and the Cochrane Library.

Review Methods

A scoping review was performed according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines. Articles reporting QoL assessment in the context of elective AAA repair were identified. Quantitative studies (i.e., traditional QoL scales) were aligned (triangulation approach) with qualitative studies (i.e., patient perspective) to identify parallels and discrepancies. Mean Short Form 36 item survey (SF-36) scores were pooled using a random effects model to evaluate sensitivity to change.

Results

Thirty-three studies were identified, of which 29 (88%) were quantitative and four (12%) qualitative. The 33 studies reported a total of 54 quantitative QoL scales; the most frequently used were the generic SF-36 (16 studies) and five dimension EuroQol (EQ-5D; eight studies). Aneurysm specific scales were reported by one study. The generic quantitative scales showed poor alignment with the patient’s perspective. The aneurysm specific scales better aligned but missed “concerns regarding symptoms” and “the impact of possible outcomes/complications”. “Self control and decision making”, which was brought forward by patients in qualitative studies, was not captured in any of the current scales.

Conclusion

There is no established tool that fully captures all aspects of the patient’s perspective appropriate for a COS for elective AAA repair. In order to fulfil the need for a COS for the management of^, AAA disease, a more comprehensive overview of the patient’s perspective is required.

中文翻译：

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以患者为中心的选择性腹主动脉瘤修复结果：生活质量量表的范围审查

客观的

为了更好地将患者的观点纳入医疗决策，正在定义核心结果集 (COS)。在腹主动脉瘤 (AAA) 领域，捕捉患者观点的努力集中在通用的定量生活质量 (QoL) 量表上。问题是这些定量量表是否充分反映了患者对 QoL 的看法，以及它们是否可以包含在 COS 的 QoL 方面。在选择性 AAA 修复的背景下对 QoL 评估进行了范围审查。

数据源

PubMed、Embase、Web of Science 和 Cochrane 图书馆。

复习方法

范围审查是根据系统审查的首选报告项目和范围审查的元分析扩展 (PRISMA-ScR) 指南进行的。确定了在选择性 AAA 修复的背景下报告 QoL 评估的文章。定量研究（即传统的 QoL 量表）与定性研究（即患者视角）相结合（三角测量法），以确定相似之处和差异。使用随机效应模型汇总平均简表 36 项调查 (SF-36) 分数以评估对变化的敏感性。

结果

确定了 33 项研究，其中 29 项（88%）是定量的，4 项（12%）是定性的。33 项研究共报告了 54 个定量 QoL 量表；最常用的是通用 SF-36（16 项研究）和五维 EuroQol（EQ-5D；8 项研究）。一项研究报告了动脉瘤特定的量表。通用的定量量表与患者的观点不一致。动脉瘤特定的量表更好地对齐，但遗漏了“对症状的担忧”和“可能的结果/并发症的影响”。“自我控制和决策”是由患者在定性研究中提出的，目前的任何量表都没有涵盖。

结论

没有既定的工具可以完全捕捉患者观点的所有方面，适用于 COS 进行选择性 AAA 修复。为了满足对于管理一个COS的需求^， AAA疾病，需要患者的角度更全面的概述。