Each year over 200,000 Americans are found to have an abdominal aortic aneurysm (AAA). Through a combination of factors, including increased screening, the number of diagnoses is likely to rise. The increasing diagnosis of AAA is a double-edged sword. Some patients will live longer: large population based studies have shown that screening selected patient groups reduces AAA- related mortality. But for some, the diagnosis may mean sacrificing quality of life. The reason - most AAA that are detected are small, below the size threshold for repair. Once diagnosed, these patients undergo surveillance, literally watching the aneurysm grow until surgery is recommended. In a study of over 126,000 U.S. veterans who undenwent screening, for every person diagnosed with AAA requiring repair, 16 were found to have a small AAA and unden/vent surveillance. The toll of surveillance on quality of life is not well understood, but may be substantial. Furthermore, there are currently no published guidelines for the 'treatment'or education of patients undergoing surveillance. The objective of this proposal is to develop and validate AAA specific quality of life and knowledge measures and describe quality of life and knowledge in patients undergoing surveillance. This tool will ultimately be used to design and measure interventions to improve the education and quality of life of these patients.
The first aim of the project is to validate AAA specific quality of life and knowledge measures. Pilot measures will be refined through focus groups and cognitive interviews with AAA patients. Content validity and sensibility will be established through structured feedback sessions with vascular surgeons. Reliability, construct validity and discriminant validity will be established through a formal validation study.
The second aim of the study is to assess AAA specific quality of life and knowledge in a broad spectrum of patients undergoing surveillance. Using the validated measures, a study of patients undergoing surveillance at three major U.S. medical centers will be conducted to describe AAA-specific quality of life and knowledge across race and gender.
Given the increasing diagnosis of AAA through screening and incidental findings, AAA surveillance will be a growing issue in the United States. Research on the impact of surveillance needs to be expanded to design and measure interventions to improve the education and quality of life of these patients.
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