Background: The purpose of AAA screening is to prevent rupture and mortality. Screening for life-threatening diseases is a double-edged sword. The aim of this study is to describe 65-year-old men’s experiences of health related quality of life and anxiety after screening for Abdominal Aortic Aneurysm, and experiences of information and reasons for not participating. Methods: 368 men answered Short Form 36 (SF-36), and anxiety and depression scale (HAD). 72 telephone interviews were conducted with the participants and 77 with those who declined to take part in the screening programme. Results: The SF-36 domains of Physical Function and Role limitations due to emotional health problems were significantly better for men who had undergone screening compared to a matched population. Compared to non-smokers, smokers had lower values in the SF-36 domains of general health perceptions, social functioning, role limitations due to emotional health problems and mental health. 80% of patients did not experience any form of anxiety/panic in connection with the screening invitation. Of the men who did not participate, 56% stated that they would like to be screened or had already undergone the examination. Conclusion: The men who underwent the investigation were healthier in some of the SF-36 domains than the general population. The participants did not experience any great anxiety before the screening and despite the short duration of the examination.
The aim of screening is to diagnose diseases before symptoms appear. Abdominal Aortic Aneurysm (AAA) is usually asymptomatic until rupture occurs but can be discovered during a physical examination for other condi- tions. Overall mortality due to ruptured AAA is about 80% in the western world [
Screening is performed for a number of diagnoses such as breast, prostate and colorectal cancer as well as AAA [
Before screening, an information letter is sent to potential participants. The information must be balanced between the benefits and negative effects of screening or subsequent management, which include morbidity and mortality, detection of a disease that would not have presented during the person’s life time and psychosocial problems. Not all participants want to make a decision about screening, which highlights the relationship be- tween such a decision (intention) and subsequent screening behaviour. Individuals who receive more informa- tion about the risks involved often participate in screening to a greater extent, although the opposite can also be the case [
The absolute risk of mortality from AAA was 3.3 per thousand (0.33) in a control group and 1.9 per thousand in an intervention group [
Knowledge of invisible changes that are normally neither felt nor experienced and only detectable by medical technologies influences and changes people’s perceptions about themselves and their bodies, as described in the case of osteoporosis, hypertension and cholesterol [
Screening of 65-year-old men is one of the many preventive interventions that take place in Swedish national health care as in many other western countries.
Disease prevention work in Sweden aims to protect and improve the health of as many inhabitants as possible. In this study, risk factors are specific health problems. The strategies used to prevent them can be systematically analysed on the basis of the risk posed by the disease in question, cost effectiveness and the degree of available evidence [
All men who reached the age of 65 years (n = 10,361) in 2009 were invited to participate in an ultrasound screening examination of the abdominal aorta, performed by paramedical personnel in five screening centres in the west of Sweden. Of these, 14.5% declined participation. 65 years is the retirement age in Sweden.
An explorative quantitative design was used in which HRQoL was measured by the Short Form 36 (SF-36) instrument, anxiety and depression by the hospital anxiety and depression scale (HAD), while a descriptive de- sign was employed in telephone interviews with specific questions. The questionnaire was distributed before and the interview conducted 7 - 14 days after screening. The participants were selected consecutively.
For the HRQoL measurement, a reference sample, age and gender-matched to the participants, was randomly drawn from the Swedish SF-36 v2.0 national normative database (n = 2185) for comparison with the present group [
Study Group 1: Questionnaire.
During the study period (14th-30th September, 2009), 516 men who had undergone AAA screening were consecutively invited to participate and answer questions about HRQoL, anxiety and depression on reaching their 65th year.
Study Group 2: Telephone interviews.
One group comprising 72 participants who had undergone screening during the previous week answered questions about the screening procedure.
Study Group 3: Telephone interviews.
A third group of 77 men who had been invited to undergo screening but failed to appear and did not bother to cancel their appointments were asked why they did not wish to participate.
The Short Form-36 (SF-36) is a HRQoL instrument developed by Ware and Shelbourne [
The participants also rated their anxiety and depression by means of the HAD (Hospital Anxiety and Depres- sion) [
Men who had undergone screening were asked structured questions about the cost (approx.12 €), information in the invitation letter and whether the interval from receiving the invitation to the screening was optimal. Additional questions were whether they had had previous experience of AAA, the time it took them to travel to the exami- nation, if it had been difficult to find a parking space, their impression of the examination room and how long they had to wait. Questions were also posed about the examination, their opinion of staff and the information they received about the results.
The men who failed to attend were asked an open-ended question about whether they had intended to participate and why they did not do so.
A letter was sent to the potential participants containing details of when and where the screening would be car- ried out, the procedure and information about the disease. For the investigation the participants only needed to pull up their shirt and lie on an examination table. Gel for the ultrasound probe was spread over the upper ab- domen. An image of the aorta was available immediately on a screen, and the participants were informed at once whether or not it was enlarged. The procedure only took five minutes.
Descriptive data were reported as means ± standard deviations or median values with ranges and presented in a histogram. A sample t-test was used to compare the SF-36 sub-scale scores with normative data (SPSS 11.0 for Windows software). p < 0.05 was considered statistically significant. When calculating the differences between the study group and the age and gender-matched reference sample, the level of significance was reduced to p < 0.001. The interviews with those who chose not to participate in the screening are only presented in percent.
All patients were thoroughly informed about the purpose of the study and their right to withdraw at any time. The Nursing Code of Ethics (2000) was used as a basis for the ethical considerations. The Regional Ethical Review Board in Gothenburg (S 40308) approved the study [
The questionnaire was completed by 368 men (71.3%), while eight declined or returned unanswered question- naires. The reason for declining to participate in the screening was illness or being abroad. Mean time for the one-way journey to the screening unit was 36.6 minutes (range 1 - 180 minutes) (SD 23.44). A total of 48 men (9.3%) did not participate in the screening examination, cancelled or rescheduled their appointment. Of the men who attended the screening, 28 (6%) were aged under 65, while the corresponding figure for those who declined participation was 27 (55). Of the respondents, 57 (16%) indicated that they smoked. Half of the men (172, 51.3%) had symptoms that hindered them in daily life. All background factors are presented in table 1.
HRQoL (SF36) was significantly improved in men who had attended the screening examination compared to the general population (
Mean values and standard deviations for HAD scores on the two scales that measure anxiety and depression are presented in
The results revealed that of those examined, 19 (5%) exhibited possible anxiety and 17 (5%) had probable psychiatric morbidity, while the corresponding figures for depression were possible depression 21 (6%) and probable depression 13 (4 %). Of these, 7 (2%) had high scores on both the anxiety and the depression scales. Five people stated that they suffered from depression.
294 (80%) did not experience any form of panic/anxiety in relation to the screening and about 272 (70%) were not afraid that something negative would happen. To the question “I feel as if I am slowed down” on the depression scale, 145 (40%) answered “sometimes”. All responses to the various items on the anxiety and de- pression scales are presented in
Background factors | Percent |
---|---|
Employed | 32 |
Worked full time | 16 |
Had a partner | 86 |
Contact with relatives | 90 |
Contact with their children | 86 |
No problem with health | 36 |
Hypertension | 14 |
Cardiovascular disease | 10 |
Pulmonary disease | 3 |
Diabetes | 8 |
Cancer | 1 |
Depression | 2 |
Gastrointestinal problems | 4 |
Musculoskeletal symptoms | 22 |
Questionnaire That Relate to Anxiety | n= | Mean | Std. Deviation |
---|---|---|---|
I feel tense or wound up. | 366 | 0.4044 | 0.62844 |
I get a sort of frightened feeling as if something bad is about to happen. | 367 | 0.3488 | 0.65985 |
Worrying thoughts go through my mind. | 366 | 0.3962 | 0.64861 |
I can sit at ease and fell relaxed. | 366 | 0.6011 | 0.70567 |
I get a sort of frightened feeling like butterflies in the stomach. | 366 | 0.3579 | 0.55914 |
I feel restless and have to be on the move. | 326 | 0.6687 | 0.77702 |
I get sudden feelings of panic. | 358 | 0.1983 | 0.49343 |
Questionnaire That Relate to Depression | n= | Mean | Std. Deviation |
---|---|---|---|
I still enjoy the things I used to enjoy. | 367 | 0.3297 | 0.55591 |
I can laugh and see the funny side of things. | 366 | 0.2541 | 0.53217 |
I feel cheerful. | 365 | 0.2795 | 0.59183 |
I feel as if I am slowed down. | 363 | 0.8650 | 0.89564 |
I have lost interest in my appearance. | 367 | 0.4905 | 0.76415 |
I look forward to enjoyment with things. | 357 | 0.4482 | 0.69163 |
I can enjoy a good book or radio or TV programme. | 358 | 0.3687 | 0.70478 |
Score 0 - 3, where a score of 0 is optimal.
HAD 1: I feel tense or wound up.
HAD 3: I get a sort of frightened feeling as if something bad is about to happen.
HAD 5: Worrying thoughts go through my mind
Had 7: I can sit at ease and feel relaxed.
HAD 9: I get a sort of frightened feeling like butterflies in my stomach.
HAD 11: I feel restless and have to be on the move.
HAD 13: I get sudden feelings of panic/anxiety.
Of the men who had taken part in the screening investigation, 67 (93%) were satisfied with the written informa- tion received. The information was described as factual but a complaint was that they were not told that only a part of the upper body had to be screened. The men were expected to know how common AAA is and the nor- mal size of the aorta. Eight (11%) of the men already knew about AAA.
With the exception of three (4%), all participants were satisfied with the interval between receipt of the letter
Score 0 - 3, where a score of 0 is optimal.
HAD 2: I still enjoy the things I used to enjoy.
HAD 4: I can laugh and see the funny side of things.
HAD 6: I feel cheerful.
HAD 8: I feel as if I am slowed down.
HAD 10: I have lost interest in my appearance.
HAD 12: I look forward to enjoyment with things.
HAD 14: I can enjoy a good book or radio or TV programme.
inviting them to the investigation and the examination itself. Two months was considered too long and a week too short. The period in the waiting room could range from 0 - 35 minutes. Waiting for up to 15 minutes was considered acceptable, although 13 (10%) men had to wait for more than 15 minutes.
The cost (approx.12€) of the screening did not constitute a problem for 289 (84%) of the men. The five minute examination was conducted in a satisfactory manner, as they reported experiencing no feeling of stress, that staff members answered their questions and allowed them time to talk. One of the men complained that staff mem- bers’ behaviour was unsatisfactory as despite his mobility problems they berated him for not getting up on the examination table quickly enough.
Information about the results was described as satisfactory by 63 (88%) of the participants. Those who were unhappy with the information provided would have preferred to see the image themselves and wanted the staff to communicate the results directly from the measurements on the screen. Several of the men wanted detailed results, the most common being the measurements of the aorta. Some were not aware of the normal values. Someone said “I did not understand what 14 meant, but it was good to get the piece of paper (with the result) to bring home”. Others did not remember what was said but read the information letter. Two (2.5%) of the men who had values above the normal range felt that staff members provided satisfactory information and responded well to questions. However, in one case the results were highlighted in red, which seemed to cause distress. Both of these men received information about where and when follow up would take place on the same or the fol- lowing day.
The telephone interviews revealed that both wives and children encouraged the men to undergo the examina- tion.
Of the 77 men who did not participate, 43 (56%) stated that they will go in the future or had previously under- gone such an examination, 6 (8%) were uncertain about the necessity of attending and 28 (36%) did not wish to take part in the screening. The main reasons for not attending were that they had forgotten the time or been away for a longer or shorter period. Some had changed their appointment in order to undergo the examination closer to home or their workplace. During the interview, many availed of the opportunity to ask questions about the survey and AAA.
The reasons stated by the 6 men (8%) who were unsure whether or not they would be able to attend were: out of town, illness or transport problems. Of the 28 (36%) who declined, most were not interested in or negative towards the investigation.
Transport was a problem for many either due to distance or no access to a car. Several had problems with the AAA (had to undergo regular examinations, treatment or had been in hospital) and had had no time to attend the screening or had already had an investigation of the aorta associated with the disease. Some men were physically or mentally disabled and their family members were unable to bring them to the examination. Others considered themselves healthy and not in need of AAA screening or believed that they would die of other causes.
AAA screening is economical from a societal perspective, and in order to save life it is important to identify people with an enlarged aorta before it ruptures. However, the question is which people attend such screening and how they experience it.
The result of this study indicates that people who participated in AAA screening had significantly higher scores in physical functioning and role limitations due to emotional health problems than a reference population, which supports previous studies that healthier people participate in screening [
Even when participants strive to maintain control and do not allow the aneurysm to affect their daily lives, it is still likely that their lives are influenced, as our informants stated that many questions about lifestyle and how to prevent the aneurysm from growing were left unanswered by the healthcare professionals. Prevention is im- portant for health promotion from a public-health perspective. People who smoked at the time of screening had a significantly lower HRQL than non-smokers.
Our results revealed that almost half of the participants sometimes experienced life as sluggish. This finding is based on responses to single questions and does not concern anxiety or depression. The men were included in the screening programme during their 65th year, which is the age of retirement in Sweden. A third of them were still professionally active. For many people, retirement implies a major change in life and this, rather than the result of the screening, may have influenced the HAD scores. However, it is possible that other factors could also have exerted an influence.
Population screening is not uncontroversial. Is it ethical to expose people who believe they are healthy to a process in which they become a “patient” when few will die of the disease, especially as most do not require treatment other than regular check-ups. Berterö et al. [
Few persons had knowledge of AAA before screening and some arrived for the examination with no idea of the type of investigation that would be made. However, a majority were satisfied with the written information provided in connection with the screening. In guidelines for screening in the UK, it is explicitly stated that pa- tients’ autonomy must be respected, as well as their right to decide whether or not to undergo any medical inves- tigation. The staff should be careful to clearly explain the purpose of the screening, the likelihood of positive or negative findings and the possibility of false-positive or negative results. “Participants in screening are autono- mous consumers of health care who should have access to information to enable informed choice about whether or not to participate” [
There are some ethical considerations that should be taken into account. The study was based on a rationalist perspective, where 65-year-old men who were considered healthy were investigated. We did not consider women’s experiences of the screening procedure, therefore the study only reflects the culture of men who could speak and understand the Swedish language.
The SF-36 is commonly used to measure HRQoL with the general population as a reference. This presents no problem when the subjects are of varying sex and age. However, the fact that our study population only com- prised men in their 65th year revealed the weaknesses inherent in the method, as the general population had a high standard deviation. We therefore decided to lower the level of significance to p < 0.001 but nevertheless present all p-values.
The men who participated in the investigation were healthier in some SF-36 domains than the matched general population. Statistical differences were seen in all HQoL domains for those who had symptoms compared to those who did not report any symptoms. Persons who smoked also had a lower score in some of the SF-36 do- mains compared to non-smokers. The patients did not experience any great anxiety/concern about the screening and despite the short duration of the examination were of the opinion that it functioned well.
More detailed information should be provided about the reason for the screening programme as well as the fact that the procedure itself is quick and simple. Clearer guidelines are required for care in the course of the exami- nation that is adapted to the individual’s physical and psychological needs, as well as for informing about the outcome. Some people may need additional information in order to undergo the screening. Caring for these pa- tients means that the nurse must be prepared to listen attentively and inquire about experiences of well-being as well as about their need to discuss worries and concerns about the screening procedure.
The authors are grateful to the patients for participation in the study.