Title:
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Development and validation of condition-specific patient reported outcome measures (PROMs) for patients with aortic aneurysm
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Despite continuing advances in the surgical management of abdominal aortic aneurysm (AAA), there is a lack of clear evidence relating to the impact of the condition and its treatment on patients’ quality of life (QoL). Furthermore, little is known about symptoms experienced by these patients or their satisfaction with
treatment.
This thesis describes the design, development and validation of three new patient reported outcome measures (PROMs) to assess QoL, symptoms and treatment satisfaction in patients with AAA: The Aneurysm-Dependent Quality of Life questionnaire (AneurysmDQoL) is an individualised measure of the impact of AAA on patients’ QoL, comprising 22 domains chosen specifically for their relevance to patients with AAA and 2 overview items to assess overall QoL and AAA-related QoL more broadly. 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 measuring satisfaction with treatment and includes subscales suitable for patients both pre- and post-intervention. The development process has shown that the new tools have good face and content validity for patients with AAA. Psychometric analyses have confirmed that they also have clear structure, good internal consistency reliability and strong test-retest reliability. The questionnaires are now ready for use in clinical trials and routine care.
Observational data derived with the new tools are also presented from a cross- sectional cohort of 194 patients with AAA. Results, though largely nonsignificant, showed interesting trends. The impact of AAA repair on QoL appeared to worsen progressively after open repair (OR) and improve progressively after endovascular aneurysm repair (EVAR). Conversely, symptoms became progressively worse after EVAR and progressively better after OR. Information and understanding were key sources of dissatisfaction before intervention, whereas postoperative dissatisfaction was related to bother from symptoms, follow-up and feedback about scan results.
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