Monitored Patients Fear AAA Ruptures

SAN DIEGO -- Nearly half of patients undergoing surveillance for their abdominal aortic aneurysm report feeling more anxious since their diagnosis, while more than 30% altered their social or physical activities.

Patients with AAAs smaller than 5 cm greatly overestimated their risks of rupture, a survey of quality of life and knowledge measures found.
(AAA shown upper right/ruptured AAA shown bottom right;
L = lumen;
C = mural clot;
H = Hemorrhage).

Those are key findings from a pilot study to assess the impact of abdominal aortic aneurysm (AAA) surveillance on patient quality of life, Dr. Brian W. Nolan reported at the Vascular Annual Meeting.

"In general, patients have a poor understanding of their condition and its risks," said Dr. Nolan of the section of vascular surgery at Dartmouth-Hitchcock Medical Center, Lebanon, N.H.

In a pilot study supported by an academic award from the Peripheral Vascular Surgery Society, he and his associates developed and tested a survey of quality of life and knowledge measures specific to AAA. Two published studies examined quality of life in patients undergoing surveillance for the condition, but they used non-disease specific quality of life measures such as the Medical Outcomes Study (MOS) 36-Item Short Form Health Survey (SF-36), "which in general are good for measuring overall health and comparing disease states, but generally lack sensitivity for detecting changes due to specific disease like AAA," Dr. Nolan explained. "Currently there are no validated AAA-specific quality of life surveys."

The researchers held focus groups with AAA patients to determine important aspects of the disease and used previously validated questions to format disease-specific measures. Over a 3-week period they mailed a questionnaire to 60 patients.

The final survey was eight pages long; it contained multiple-choice questions regarding five AAA-specific domains: anxiety, physical activity, social function, perceived risk, and health state utility.

"It's self-administered and takes patients 15-20 minutes to complete," Dr. Nolan said.

Of the 60 surveys that were mailed, 40 were returned, for a response rate of 67%. The mean age of respondents was 74 years and nearly three-quarters (72%) were male. The mean size of their AAA was 4.7 cm; 48% had been undergoing surveillance for 1-5 years.

The majority of the patients (79%) were diagnosed incidentally. Some reasons for the surveillance were, "my doctor said the AAA is too small" (59%), and "my doctor said surgery is too risky" (14%); 27% weren't sure why their aneurysm hadn't been fixed.

When asked to describe how they felt about discovering their aneurysm, 75% said they were glad they found out about it, 18% were neutral, and 7% said they wish they had never found out about it.

During the month preceding the survey, 48% of respondents had unwanted thoughts about their aneurysm, 43% felt anxious, 39% were worried, 25% felt overwhelmed, and 7% had trouble sleeping.

Since diagnosis of their aneurysm, 46% said they felt anxious and 25% said they more often were sad.

The AAA diagnosis also had an impact on patient activity. Nearly half (48%) reported that they had their blood pressure checked more frequently since their diagnosis, 30% limited their strenuous activity, 18% limited their travel, 11% limited their sexual activity, and 7% limited their work.

Many patients also reported concern that the following somatic symptoms were caused by their AAA: back pain (43%), abdominal pain (41%), respiratory difficulty (35%),and fatigue (33%).

When asked about their hypothetical willingness to "trade" their AAA for other conditions, 64% of respondents said they would trade it for a broken leg, 35% for chronic back pain, 26% for coronary artery bypass graft, and 8% for lung cancer.

Dr. Nolan noted that patient perception of rupture risk was generally exaggerated. "The actual risk of rupture based on AAA diameter was 4%, but the patient-reported risk was 22%," he said. "In addition, 26% reported that their aneurysm was likely or very likely to rupture in the next year. Higher perceived risk correlated with higher anxiety scores."

The researchers used the findings from the pilot study to develop a six-page educational brochure for AAA patients that contains six domains of general and patient-specific aneurysm information, including general facts about aneurysms, rupture risk by size, and typical growth rates. The brochure is currently being tested using quality of life and knowledge measures.

Dr. Nolan disclosed no conflicts.