AAA is uncommon in people under the age of 60 (see result card RC-CUR3). The mean age of patients undergoing AAA repair is reported to be 72.1 (see result card RC-SAF1). While most patients diagnosed with an AAA may be out of the workforce, daily life may be still be affected.

The detection of an AAA might entail surveillance and AAA repair (operation) might be recommended (see result card RC-CUR14).

A study by Berterö et al. points to limitations on daily life following the detection of an AAA. Patients felt more restricted and were conscious of a risk in relation to doing something that could be seen as hazardous, such as carrying heavy loads {1}.

A study by Letterstaal et al. shows patients experiencing limitations and needing help from relatives and healthcare staff after AAA operation {2}.

AAA screening may affect first-degree relatives by indicating that they may have an increased risk of AAA. In an article drawing on six studies with a total participation of 196 male first-degree relatives and 225 female first-degree relatives it was estimated that the prevalence of AAA is 24% among men and 5% among women. The cause is unknown and might include genetic as well as familial environmental factors {3}.

No studies were identified.

There is no evidence that AAA screening generates changes in social roles. Being detected with an AAA eventually leads to an operation posing a risk of death and of complications and thereby a change in social roles.

Further information on risk related to AAA screening and repair (operation) can be found in the result cards: RC-SAF1, RC-SAF2 and RC-SAF4.

Resources are needed for information throughout the programme and for support by healthcare staff after operation {2}.

As AAA poses a risk of rupture, the detection of an AAA through screening necessitates some decisions to be made. If the outcome of AAA screening is the detection of an AAA for which future follow-up is recommended, the patient and eventually significant others need to be informed and involved in decisions related to the follow-up. A person detected with an AAA recommended for operation might have to make decisions in relation to this and if an operation is accepted they might have to decide on the type of operation (OAR versus EVAR). Because an operation for AAA involves a risk of death and of complications (see result card RC-SAF1 for further details) appropriate counselling and information in relation to AAA screening is necessary but is also difficult.

It seems important to pay close attention to the group of patients diagnosed with a small AAA and participating in a control set up because studies indicate that these patients might constitute a particularly vulnerable group (see result card RC-SOC4 for more information).

More information on this topic can be found in the result card RC-LEG6 where it is stated that appropriate counselling and information is legally regulated and that the provider is to secure informed consent and appropriate care including recommended follow-up. In result card RC-SOC7 the issue of patient information is further described.

How patients are influenced in terms of QoL by AAA screening is described in result card RC-SOC4 and how they act and react in result card RC-SOC5.

25 studies were included, 21 including QoL and using different scales (included in the table below) and four studies using a qualitative methodology (not included in the table).

Being offered the chance to participate in a screening programme may trigger both negative and positive reactions among those invited. Experiences from other screening programmes indicate that different psychological effects may occur when implementing a screening programme. These include fear, anxiety and other psychometric reactions. In an ideal research design of a screening programme, you would have to consider the effects of being invited to participate in the screening programme and the effects of accepting the invitation. The next step would be to examine whether  participants react different accordingly to the result of the screening test. The most informative design would be to compare participants from the screening programme with a matched population, not participating in the screening programme, instead of comparing subgroups within the screening programme.

Except from the qualitative studies, all the studies included in this review measure psychological changes by means of QoL measurement.

In an overall perspective, a screening programme for AAA contains different points in time, where it seems relevant to measure QoL. Figure 2 illustrates these points in time.

Figure 2: An outline of relevant points in time for measuring quality of life among people invited to participate in a screening programme for AAA

Table 1 displays all the quantitative studies included in the review in terms of e.g. design, study quality and effects. This provides an overview of the effects on QoL, following screening for AAA. The participants are classified in three groups. Overall there are no significant differences between the groups, but a description and interpretation of the results follows below the table.  

Table 1: Comparison of Quality of Life in different patients groups, following screening for AAA

i) Studies using more than one study design or different follow-up, ii) Octogenarians were compared with a younger group of patients in a crossover design, iii) Patients operated for small aneurysms, iv) Operative vs. elective, v) Operative vs. non-operative, vi) Operative vs. population

Patients with small AAA/or on waiting list (AAA) for operation compared with patients whose screening results were negative or non-screened controls

Some of the studies indicate that patients diagnosed with at small AAA are more affected, in terms of QoL, than other groups identified in relation to screening for AAA. In Lindholt 2000, patients diagnosed with a small AAA, had the lowest QoL compared with a group of age and gender matched people, who did not attend the screening programme. Patients diagnosed with a small AAA were enrolled in a control set up with scanning of the aorta at fixed intervals. While participating in this control set up, the patients got worse in terms of QoL. However the differences between Lindholt 2000 and the other studies are considered minor {9}.

A qualitative study by Petterson et al. showed that some of the patients diagnosed with a small AAA felt that the frequent follow-up gave rise to questions about what would happen if it ruptured and to thoughts about death. Waiting for surgery was for some people experienced as similar to waiting for a death sentence. On the other hand almost all patients expressed gratitude that the AAA had been discovered. Gratitude for being alive appears to have outweighed the suffering and the sacrifice of well-being following treatment {24}. Letterstål et al. also reported, in a qualitative study, that understanding the seriousness of the situation created distress while waiting for surgery. Sleep disturbances caused by nightmares and thoughts were also experienced by some of the patients {2}. It is possible that the qualitative studies capture some of the psychological effects of screening for AAA, which are not captured in the generic measurements of QoL.

Ruptured abdominal aortic aneurysm compared with an elective group or matched population

In nine studies QoL was assessed in patients operated on for a ruptured AAA. Eight studies used a cross-sectional design {10-17} and one study is a review {18}. The studies are mainly of a moderate quality regarding internal validity. QoL is measured using six different validated QoL scales. Overall no difference in QoL could be shown between the groups. As described in the table, QoL in patients operated for a ruptured AAA was compared with QoL in an elective group of patients operated for AAA or QoL in a matched population. Five cross-sectional studies compared patients with a ruptured AAA to a normal population, and three cross-sectional studies to elective patients. Typically the studies identified patients from historical patient records and then measured QoL (self-rated) in a cross-sectional design. Laukontaus et al. showed a significantly lower EQ-5D score among survivors, than in the background population {14}. This result is inconsistent with Korhonen et al. (who used the same basis for recruitment) {10}. The difference in results may be explained by different questionnaires and a small sample size.

There is a risk of selection bias in the studies since a considerable number of the patients operated for a ruptured AAA died, before the researchers could collect relevant data. Furthermore it is also possible that healthier patients are more likely to answer questionnaires than less healthy patients.

In spite of the weak designs of the studies and the risk of bias, the results taken as a whole do not imply any differences in QoL in patients operated for a ruptured AAA compared with a group of elective patients or an age- and sex-adjusted normal population. Consequently most studies suggest that survivors of ruptured AAA can expect a good QoL, which is comparable to that of patients undergoing elective repair or a normal population.

Patients operated for small AAA or AAA compared with surveillance and/or controls

In seven studies QoL was assessed in patients operated on for a small AAA or AAA compared with patients undergoing surveillance or healthy controls. Three studies used a cross-sectional design {7,19,21} and four studies were randomised controlled trials (RCTs) {6,20,22,23}. The studies vary in quality regarding internal validity from low to high with two RCTs being of high quality. Eight different fully (or partially) validated and one non-validated (ScreenQL) QoL scales were used to measure QoL, with follow-up times from 3 months to 8 years in the RCTs.

In general no difference in QoL can be shown between the groups. There is a tendency towards better, short lasting effect on QoL in patients undergoing surgery. However, the effect levels out in time.

Four studies investigate patients with a small AAA, and two studies examine patients with AAA > 5.5 cm. Sandström et al. examined patients with AAA between 4.7 and 7.5 cm {21}. De Rango et al. showed changes in mean SF-36 scores at 6 months from baseline that were significantly higher for early EVAR patients than for surveillance patients, although the effect size is considered small {20}. The effect levelled out in the final follow-up. In spite of the varying study designs and varying quality of the studies, the results above all point in the direction of no difference in QoL in patients operated for an AAA compared with patients under surveillance or controls. Some short-term effects can be identified, but it does not change the overall picture, which suggests that there is no difference between the groups.

Two qualitative studies, one by Langenberg et. al. {25} and one by Brannstorm et al.{26}, show that the participants use different coping strategies when confronted with diagnoses of AAA and that patients generally derive reassurance from the professionals and the professional set-up around the screening programme.

All things considered, this review does not reveal any significant changes or differences in quality of life following screening for AAA. If screening for AAA is implemented, it might be advisable to pay close attention to the group of patients diagnosed with a small AAA and participating in a control set up. Some of the studies indicate that these patients might constitute a particularly vulnerable group.

A weakness in this review is the fact that a lot of the studies included lack a control group outside the study. The studies are designed to compare groups within the screening programme and not with an outside control group.

The general experience from public screening programmes in Sweden, England and Ireland is that men invited for screening are very satisfied {Available as separate file fielname.extenson }.

Berterö et al. explored how the finding of an enlarged aorta (≥30 mm) influenced life situation after 1 year. Analysis of interviews with ten men identified three themes: i) feeling secure being under surveillence, ii) living as usual, but repressing thoughts iii) experiencing disillusionment due to potential negative outcomes. The men felt secure and trusted the healthcare system, but also felt they were being judged on lifestyle and lifestyle changes. While living as usual they were, in the back of their minds, aware of their enlarged aorta. Thoughts of having a defect and that something could suddenly happen came to their minds when doing things that could be seen as hazardous, such as carrying heavy loads. The men experiencing a growing aorta felt disillusioned since they did not expect that to happen and they worried about an eventual operation. There were feelings of being limited by further controls and conscientious in daily activities {1}.

In a qualitative study by Pettersson and Bergbom patients who had been operated on for an AAA 1 month before the interview expressed both gratitude and inability to come to terms with the discovery of a life-threatening condition. They expressed both a feeling of living on borrowed time and a sense of being granted a new lease on life. The frequent follow-up prior to operation had given rise to questions about what would happen if the AAA ruptured and to thoughts about death. Waiting for surgery was experienced as similar to waiting for a death sentence and being aware of AAA meant that any physical sign or symptoms were worrisome {24}.

Langenberg and Abholz explored the coping strategy among patients diagnosed with a small AAA. Interviews with 26 patients (no description of gender) showed that they were coping with the psychological burden of AAA in multiple ways including optimism, denial and self control. Coping was influenced by professional help, own age, time for diagnosis, size of aneurysm and previous experiences with diseases {25}.

In result card RC-SOC4 the psychological changes are assessed by QoL measurements.

High age, low social class, being single and travelling a long distance to the screening facility seem to constitute factors preventing participation in AAA screening after an initial postal invitation. In the Danish study by Lindholt et al. the proportion attending screening decreased significantly with increasing age (p=0.04). The mean attendance rate for people living within 20 km of the screening facilities was 77.5% while it was 69.8% for people living further away. The mean attendance rate for married men was 78.8% while it was lowest (59.1%) for those who never married. The mean attendance rate for people from the higher social classes was 81.3% while it was 72.6% among the lower social classes (p<0.01) {35}.

An American cohort study reported a compliance rate of 98.5% during follow-up after implementing an AAA surveillance pathway. Patients diagnosed with an AAA >4.0 cm were entered into the clinical pathway incorporating continuity of AAA care from a single provider. A shared database and a facilitator were factors securing the pathway, which included an initial telephone contact, clinical appointment within 2 weeks including discussions and education on AAA (oral and in print) and relatives being encouraged to participate. the pathway also included regular update by phone and letters as well as possibility for patients to phone during the regular follow-up time. Unnecessary clinic visits and travel were avoided and accommodations for transport arranged. Missed appointments were followed up {36}.

A study by Berman et al. shows that patients do not appreciate the scope of their options regarding whether or not to have surgery {27}.

Information and decision making in relation to AAA repair is further described in result card RC-SOC7.

According to a survey, patient information used in AAA screening varies {Available as separate file filename.extenson}.

Risk communication in relation to operating for AAA might be particularly difficult due to uncertainty related to outcomes and a choice between two procedures with distinct risk profiles. Whether or not to undertake a problematic prophylactic intervention for an asymptomatic condition is particularly difficult for the elderly, who are at the highest risk of post-operative morbidity and yet have the least potential for long-term survival {28}.

In-depth interviews with patients who had undergone AAA repair identified four central themes: i) patients did not appreciate the scope of their options in relation to surgery ii) patients were not adequately informed prior to decision making iii) patients differed in the scope and content of information they desired iv) trust in the surgeon had an impact on the informed consent process. The study showed limitations in current practice in relation to the informed consent encounter suggesting that the information should go beyond the disclosure of risk, benefits and alternatives. It seems critical to adapt the informed consent encounter to incorporate the patient’s perspective in order to ensure that the decision about AAA repair is consistent with the patient’s informed preference {27}.

Interviewing patients 1 month after AAA repair showed that patients felt ill-prepared for decision making and for potentially distressing situations after surgery. When advised to undergo surgery they felt they had no choice and simply had to go with the flow {24}. Other studies pointed to a need for individualised detailed and specific information before and after operation {2,29}.

While surgeons agree on the need to provide risk information there is no agreement on what constitutes effective risk communication {30}. A study showed that mortality was the one risk that the majority of surgeons agreed should be included in informed consent for AAA repair. There were substantial variations in opinion among surgeons about which risks should be included and which complication rates should be quoted. Further efforts are needed to establish informed consent guidelines, which could be accomplished by a panel consisting, not only of vascular surgeons, but also patients and legal experts {28}.

A study explored the information provided to patients with AAA by analysing 35 consultations involving 11 surgeons. The consultations included 13 patients with small AAA (<5.5 cm) and 22 patients with large AAA (≥5.5 cm). Of the consultations with patients with small AAA 8% covered the characteristics of the disorder, the procedure and the aim of therapy, the consequences and risks of the procedure, alternative treatment options and individual prognosis. These aspects were covered for 41% of the consultations with patients with large AAAs. In 31% and 18% of the consultations, respectively, the patient’s preference was explored {31}.

Four studies of how best to inform patients were identified. In one study people who had previously undergone AAA surgery were presented with different formats of risk information and asked to choose between two different treatment options (surgery vs. observation). In general the information was seen as helpful though all formats had drawbacks. Patients with a greater desire to be involved in decision-making preferred more, and more complex, information compared with patients who wanted to be less involved, suggesting that the choice of risk format might be more important for patients wanting to be less involved in decision-making {30}. In another study patients receiving an individualised brochure felt they had a better understanding of issues important for treatment decisions and had prepared more questions for the second consultation {32}.

A study showed a computer-based decision support tool, tailored to the patient’s treatment options, co-morbidities and functional status, to be feasible and well accepted {33}.

The Guideline from the American Society for Vascular Surgery states that there is a need to develop optimal methods for invitation to AAA screening and to determine how best to provide risk-benefit information for individuals offered screening {34}.

Examples of patient information for AAA screening are available at: http://aaa.screening.nhs.uk/leaflet and at http://www.uptodate.com/contents/patient-information-abdominal-aortic-aneurysm and http://www.vascularweb.org/vascularhealth/Pages/Patient-Success-Stories.aspx

Risk communication in relation to operation for AAA might be considered particularly difficult because of the uncertainty related to outcomes and the possibility of having to choose between two procedures with distinct risk profiles. Whether or not to undertake a problematic prophylactic intervention for an asymptomatic condition is particularly difficult for the elderly, who are at the highest risk of post-operative morbidity and yet have the least potential for long-term survival {28}.

In a study by Timmermans et al. patients with a higher desire to be involved in decision making preferred more, and more complex, information compared with patients who wanted to be less involved in decision making, suggesting that the choice of risk format might be more important for patients wanting to be less involved in decision making {30}.

The issue of information in relation to AAA screening and eventual follow-up is further described in result card RC-SOC7 while the obstacles in relation to the initial invitation for AAA screening are further described in result cards RC-SOC8 and RC-SOC11.

The general attendance rate at screening is reported as high (SAF6). A Danish cohort study inviting 4404 males of 65-73 years of age showed an attendance rate of 76% after postal invitation to AAA screening. The possibility of changing the time and date, and re-invitation increased the attendance rate by 11%. A significantly higher prevalence of AAA was found by secondary attendance compared with primary attendance (6.3% vs. 3.9%). Low age, high social class, being married, short travel distance to screening facility, and cardiovascular and pulmonary diseases were independent predictors for participation. Cardiovascular and pulmonary diseases and secondary recruitment were independent predictors for AAA {35}.