Patients’ perceptions of conservative treatment for a small abdominal aortic aneurysm

Abstract

Background

An abdominal aortic aneurysm (AAA) is a progressive, generally symptomless disease that could ultimately result in a fatal rupture. Current guidelines advise conservative follow-up, and preventive surgical repair once the risk of rupture outweighs the cost of repair (55 mm in men). In developed countries, the majority of patients are diagnosed with AAAs less than 55 mm, and so enter a period of conservative surveillance. An important question is how patients perceive and cope with risk of rupture, AAA diagnosis and treatment, and presented AAA information. The goal of this study was to gain insight into patients’ perceptions of conservative treatment for a small AAA to increase patient satisfaction.

Methods

We conducted semistructured in-depth interviews and used questionnaires measuring health-related quality of life (RAND 36-Item Health Survey 1.0), illness-perceptions (Illness Perception Questionnaire – Revised), and anxiety and depression (Hospital Anxiety and Depression Scale). Interviews were audio recorded and transcript contents were analyzed based on grounded theory. Mean scores of the questionnaires were compared to (population) reference groups.

Results

This study included ten male patients under surveillance for a small AAA from two hospitals in the Netherlands. Patients expressed no fear for AAA rupture, and also reported low levels of anxiety and depression in both the interviews and the Hospital Anxiety and Depression Scale. The presence of an AAA did not affect their social life or emotional well-being. The reported poorer physical health on RAND 36-Item Health Survey 1.0 presumably reflected common presence of comorbidities. Participants stated to that they were content with the frequency and setup of AAA surveillance. However, they generally lacked knowledge about AAA disease and/or treatment options.

Conclusion

Conservative AAA follow-up ensures patients that the risks of AAA disease are limited. The vascular surgeon is the most important source of AAA information to patients, and patients fully rely on their vascular surgeon to take control in AAA treatment.

Keywords:

• abdominal aortic aneurysm
• patient perceptions
• patient preference
• quality of life
• interviews
• patient-reported outcome measures

Supplementary material

The interviews were conducted in Dutch. The questions and responses were translated to English by SMT in collaboration with Dr Roxanne Parslow.

Interview guide on small abdominal aortic aneurysm (translated from Dutch)

Introduction: “The subject of this interview will focus on you as a patient, living with the condition, abdominal aortic aneurysm. The purpose of this study is to use the information obtained from this interview to improve the treatment, care, or services for patients with an aneurysm. This conversation takes place in a confidential setting, in which you are free to say whatever you would like to say. We would like to know about your experiences, how you feel, and what you think, so do not hesitate to respond with your honest opinion. The responses you give in this interview are anonymous and cannot be traced back to you as a person. It is also important that you know that the responses you give will have no influence on your treatment and will not be heard by (one of) your doctor(s).

Some of the subjects in this interview might be challenging or upsetting for you. If you experience this, or you find this difficult, please let us know during the interview. If you do find a question challenging, we hope you will still try to answer, as those questions are probably the ones we do not have much knowledge about. However, you do not have to answer every question. If a question is not clear to you, please ask us to clarify this.

Do you have any questions or comments you would like to address before we begin?”

(For the interviewer: during the interview, use the follow-up question “Could you tell me more about this?” if additional information is needed.)

Open with:

1. Could you start by telling me something about yourself?

2. If you would have to explain to your neighbor what an aneurysm is, how would you explain this?

Status of the aneurysm

Introduction of the subject: “I would like to start with a few short, general questions about the diagnosis and treatment of your aneurysm.”

1. When was the aneurysm diagnosed in your case?

2. How was the aneurysm discovered?

3. What was the size of the aneurysm at diagnosis?

4. Has the aneurysm grown in size since the diagnosis?

5. How often do you receive surveillance for the aneurysm? Is this by ultrasound or CT?

6. How often would you like to receive surveillance for the aneurysm? More or less frequently? Why?

7. How has the aneurysm surveillance been?

Patient education and information

“With the following questions, I would like to know more about the information about aneurysms that you have received in this hospital and what you think about it. Could you tell me more about this?”

Hospital

8.	Did you receive information in this hospital about an aneurysm at diagnosis? (This could be written information or oral information from a doctor.)
9.	Did you receive information in this hospital about an aneurysm during your surveillance period?
10.	If yes, what kind of information was this? (written/oral?)
11.	Was this information sufficient in your opinion? – After receiving and/or reading it, did you learn everything you wanted to know?
12.	What did the information give you? – Did it provide reassurance or did it cause more worry?
13.	Did the information change your view of an aneurysm? – If yes, how did it change your view? – If no, why did it not change your view?
14.	Do you feel like you can say or ask anything during a consultation with the vascular surgeon? – If yes, did you say or ask anything during a consultation with the vascular surgeon? – If no, why not? Internet
15.	Did you search the internet for information about aneurysms? – If yes, did you find what you were looking for? – If no, why not?
16.	Was that information sufficient in your opinion? – If no, what did you still want to know?
17.	What did the information give you? – Did it provide reassurance or did it cause more worry?
18.	Did the information change your view of an aneurysm? – If yes, how did it change your view? – If no, why did it not change your view? Comorbidity “During the following questions, I would like to ask more about whether you have any other diseases.”
19.	Do you have or had any other medical diseases? – If yes, what do you have, and can you tell me more about it?
20.	Do you have any other physical symptoms? – If yes, can you tell me more about it?
21.	Could you make a list of all the medical diseases or physical symptoms you have and rank them based on their physical burden, where number 1 has the highest physical burden and rank the rest in descending order? With physical burden, we mean experiencing physical discomfort or limitation.
22.	Could you make a list of all the medical diseases or physical symptoms you have and rank them based on their mental burden, where number 1 has the highest mental burden and rank the rest in descending order? With mental burden, we mean experiencing worries or emotions or being mentally occupied by it.
23.	If you were asked to grade your own health with a grade between 1 and 10, where 10 is excellent and 1 is very bad, what would that grade be? – How was your health in the past, for instance, 5 years ago? What would that grade be then?
24.	When reviewing your current health, what would be needed to raise that grade?
25.	What does “health” mean to you? Which aspects play a role when reviewing your own health? Lifestyle “With these next questions, I would like to ask more about your lifestyle.”
26.	Do you smoke? – If yes, do you smoke more than one pack per week? How much exactly? – If yes, have you ever smoked more than one pack per week? How much was this and for how long? – If no, have you ever smoked? – Has your smoking habit changed after being diagnosed with an aneurysm? → If yes, why and how?
27.	Do you drink alcohol? – If yes, do you drink more than two alcoholic beverages per day? – Has your alcohol consumption changed after being diagnosed with an aneurysm? → If yes, why and how?
28.	Do you sleep more than 6 hours per night? – Do you sleep well? – If no, why not? – Has your sleeping habit or quality changed after being diagnosed with an aneurysm? → If yes, why and how?
29.	Do you get exercise or do you do sports? – If no, why not? – If yes, what type of exercise/sports per week? Has this changed after being diagnosed with an aneurysm? → If yes, why and how?
30.	What do you generally eat during a normal day? – Has your eating pattern changed after being diagnosed with an aneurysm? → If yes, why and how?
31.	How do you see your future and in what way has this changed since you found out you have an aneurysm?
32.	In hindsight, would you rather not know that you have an aneurysm?
33.	In the Netherlands, there is an ongoing debate about starting a national AAA screening program in which men over 65 years are being screened for an AAA through an abdominal ultrasound. What do you think about a national AAA screening program? Social environment/social activities “In the next questions, I would like to know more about your social life and whether being diagnosed with an aneurysm possibly had any influence on this. Could you tell me more about this?”
34.	Could you tell me something about how and with whom you live?
35.	Do you have people in your (social) life, you can talk to about personal things if you want to? – If yes, with who did/do you talk?
36.	When was the last time you talked about your aneurysm with anyone? – What did you discuss?
37.	What has talking about your aneurysm with someone else brought you? – Did it provide reassurance or did it cause more worry?
38.	Do you know anyone personally who has had experience with an aneurysm? – If yes, could you tell me more about this?
39.	Did your social life change after being diagnosed with an aneurysm? – Do you still do the same things you did before, like vacations, hobbies, or visiting friends or family? – If yes, could you tell me more about this? Quality of life “Current health care is focused on maintaining or improving someone’s quality of life. With the following questions, I would like to learn more about what your definition of and view is on your ‘quality of life.’” (Explain quality of life if necessary as follows: being able to live your life as you want to.)
40.	What is your definition of “quality of life?” – What aspects are important to you when thinking about “quality of life?”
41.	If you were asked to grade your own quality of life with a grade between 1 and 10, where 10 is excellent and 1 is very bad, what would that grade be? – How was your quality of life in the past, for instance, 5 years ago? What would that grade be then?
42.	When reviewing your current quality of life, what would be needed to raise that grade?
43.	If you could live a perfect life, what would that look like? And why would that be perfect?
44.	If there was some sort of organization of foundation for people with an aneurysm that you could use for information or contacting other people with an aneurysm etc, would you be interested in using that for yourself? Coping with chance of rupture (Introduce only when previously established that the patient is aware of risk of rupture.) “As you probably know the danger of having an aneurysm is that it can rupture (burst). Although the chances of rupture are very slim, it remains an unpredictable disease. The following question will ask about your view about this and the way you handle the risk of rupture.”
45.	Do you know what the symptoms are of a ruptured aneurysm? → If yes, could you tell me more?
46.	What do you think the chance of the aneurysm rupturing is in your case?
47.	Do you worry about the aneurysm? About aneurysm rupture? → If yes, could you tell me more?
48.	Do you worry the aneurysm has ruptured whenever you experience abdominal or back pains or when you feel ill? → If yes, could you tell me more?
49.	Have you ever thought your aneurysm has ruptured? → If yes, could you tell me more?
50.	Did you ever consult a doctor because you thought that your aneurysm had ruptured? → If yes, could you tell me more?
51.	Do you take the aneurysm (and the possibility of rupture) into account when doing things in your daily life? – Are there any things you do not do anymore because of the aneurysm? – If yes, could you tell me more?
52.	If you could choose, what kind of treatment would you prefer for the aneurysm and why? (Explain treatment options if necessary: no treatment, surveillance, open abdominal surgery, or endovascular aneurysm repair.)
53.	Popularly speaking, an aneurysm is often referred to as a “ticking time bomb,” how do you feel about this? Sexual activity “We know from previous conversations that having an aneurysm can limit someone in their sexual life, in the form of feeling inhibited, reduced frequency, or less excitement for instance.”
54.	Have you ever experienced this? – If yes, could you tell me more?
55.	This is the end of the interview. Do you think that we covered all things that matter to you? – If no, is there anything you would like to add, ask, or tell? Thank you very much for your cooperation. --------End of interview--------

Acknowledgments

We thank Dr Roxanne Parslow for providing language help with the English translation of the interview guide. In addition, we thank all participants in this study for their cooperation.

Author contributions

SMT, WAG, JFH, and JHNL contributed toward the study concept and design. SMT, JPPMV, and JFH dealt with reaching out to patients. SMT was responsible for acquisition of data. SMT, WAG, VCH, JFH, and JHNL conducted statistical analysis and interpretation of data. SMT, WAG, JFH, and JHNL drafted the manuscript. SMT, WAG, JPPMV, VCH, JFH, and JHNL revised the manuscript critically for intellectual content. JPPMV, JFH, and JHNL supervised the study. All authors contributed toward data analysis, drafting and critically revising the paper, gave final approval of the version to be published, and agree to be accountable for all aspects of the work.

Disclosure

The authors report no conflicts of interest in this work.