Design of new patient-reported outcome measures to assess quality of life, symptoms and treatment satisfaction in patients with abdominal aortic aneurysm

Background: No condition-specific patient-reported outcome measures exist for patients with abdominal aortic aneurysm (AAA). The aim of this work was to develop three questionnaires to assess quality of life (QoL), symptoms and treatment satisfaction in patients with AAA. Methods: Semistructured interview techniques were used to explore patients' experiences of having an AAA in a series of focus groups and in-depth interviews. The information gathered was used to inform design and selection of items for the new tools; the overall structure of the new questionnaires was based on tools developed previously for patients with diabetes and other conditions. Results: Fifty-four patients (51 men, 3 women; mean age 71.9 years) were recruited from four NHS Trusts to participate in focus groups or interviews, either while under surveillance, or following AAA repair (using open or endovascular techniques). The Aneurysm-Dependent Quality of Life Questionnaire (AneurysmDQoL) is an individualized measure of the impact of AAA on patients' QoL. Twenty-three domains were chosen specifically for their relevance to patients with AAA, with a further two overview items to assess overall QoL and the impact of AAA on QoL. The Aneurysm Symptom Rating Questionnaire (AneurysmSRQ) is a 44-item measure assessing physical and psychological symptoms reported by patients with AAA. The Aneurysm Treatment Satisfaction Questionnaire (AneurysmTSQ) contains 11 items, suitable for patients before and after surgical intervention. Conclusion: The iterative development process reported here has confirmed that these three new tools have good face and content validity for patients with AAA.