Patient Reported Outcome Measures for Dutch Patients with an Abdominal Aortic Aneurysm: Validation and Introduction into Daily Practice.

Abstract

This study aimed to develop, validate, and introduce two patient reported outcome measures (PROMs) for patients with abdominal aortic aneurysm (AAA): the AAA-Symptoms and AAA-Quality of Life (AAA-QoL). This was a longitudinal cohort study. The PROMs were based on two previously developed questionnaires, the Aneurysm Symptom Rating Questionnaire and the Aneurysm Dependent Quality of Life Questionnaire, which were translated into Dutch, pre-tested with cognitive interviews, modified, and optimised after psychometric analyses of longitudinal data. The AAA-Symptoms questionnaire consists of a total scale and five subscales (mental, pain, frailty, abdominal, and legs), and the AAA-QoL questionnaire consists of a total scale and three subdomains (wellbeing, participation, and leisure). Patients completed the questionnaires after diagnosis, prior to follow up consultations, and before and after surgery between 2021 and 2024. Construct and criterion validity, responsiveness, and minimum important change were analysed. Cronbach's α was used to assess the internal consistency of the subscales. An electronic dashboard was created to provide insight into the outcomes. Four hundred and seventy-five patients with AAA were included. Response rates varied from 100% at baseline, to 78 - 100% during surveillance, 95% pre-surgery, and 59 - 77% post-surgery (91.5% underwent endovascular repair). Both the AAA-Symptoms and AAA-QoL questionnaires had acceptable to excellent internal consistency (α = 0.58 - 0.87 and α = 0.87 - 0.96, respectively). Convergent and divergent validity were supported by moderate and weak interscale correlations within and between the scale scores of the two questionnaires, respectively. All quality of life outcomes improved after surgery, particularly patients' wellbeing, mental, and abdominal symptoms. Two disease specific PROMs (AAA-Symptoms and AAA-QoL) for patients with AAA were developed and validated. The findings support the validity, reliability, and responsiveness of these PROMs. Both PROMs can be used in daily practice.