Towards Patient Centred Outcomes for Elective Abdominal Aortic Aneurysm Repair: A Scoping Review of Quality of Life Scales.

ABSTRACT

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.