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National Clinical Guideline Centre (UK). Varicose Veins in the Legs: The Diagnosis and Management of Varicose Veins. London: National Institute for Health and Care Excellence (NICE); 2013 Jul. (NICE Clinical Guidelines, No. 168.)
Patient expectations and perceptions concerning varicose veins may be derived from many sources. The most common sources include GP clinics and hospitals, conversations with family and friends, direct experience of others with the condition, and information on the internet and in the mass media. Some of these sources are misleading, unreliable and can be conflicting. This results in confusion and may lead to some people with varicose veins becoming more anxious. The information given can lead to unrealistic expectations about 1) the likely progression of varicose veins, and 2) the outcomes of any treatment. Such unrealistic expectations may have a negative effect on a person’s quality of life.
To minimise misconceptions throughout all stages of care it is crucial to ensure that people with varicose veins are fully informed about their condition. People need information of the range of evidence-based treatments available, and their possible risks, to enable them to make properly informed choices.
It is hard for people with varicose veins to identify good quality information on the diagnosis and management of varicose veins. This emphasises the urgent need to provide such guidance, together with the most effective means of promoting and providing this information.
5.1. Review question: What are the perceptions and expectations of people with varicose veins (e.g. natural history, treatment) and how can they be addressed?
For full details see review protocol in appendix C.
Table 8Characteristics of review question
| Setting | Primary and secondary care |
|---|---|
| Population | Adults with leg varicose veins. |
| Intervention | NA |
| Comparison | NA |
| Evaluation | Narrative summary of findings on patient perceptions and expectations related to the assessment, treatment, treatment success/failure, retreatment, adverse events and disease progression of varicose veins. Studies suggesting how such expectations can be addressed were also evaluated. |
5.2. Clinical evidence
This review has been separated into three sections:
- Expectations and perceptions about varicose veins
- Managing expectations and perceptions
- Communicating information
The first section encompasses the first part of the review question (What are the perceptions and expectations of people with varicose veins?), and the latter two sections encompasses the second part of the review question (How can they be addressed?).
5.2.1. Expectations and perceptions about varicose veins
Summary of included studies
Six studies were identified that were relevant to the review question concerning the expectations and perceptions of people with varicose veins. Five of the studies recruited people who had been referred for treatment to a vascular clinic 17,24,30,77,98. One was a qualitative study77, whilst the other 5 were questionnaire surveys 17,24,30,98,110. The qualitative study77 was graded as ‘moderate’ quality as it used the appropriate methodological approach for evaluating patient perceptions, but did not describe the timing of the data collection clearly. Four of the surveys 24,30,98,110 were graded as ‘very low’, as they had used closed questions within a quantitative format, and most failed to report their questionnaires adequately. One survey 17 was graded as ‘low’, as although it did not apply appropriate qualitative techniques it did use open questions and the questionnaire was well- reported. The studies are summarised in Table 9.
Table 9
Summary of studies analysing patient perceptions and expectations.
See also the study selection flow chart in appendix D, clinical evidence tables in appendix G and exclusion list in appendix J.
5.2.1.1. Narrative summary
As only Darvall 2009 reassessed people’s expectations and perceptions post treatment these results do not inform us about the accuracy of their perceptions and expectations.
Palfreyman 2004
This moderate quality qualitative study of 16 varicose vein patients elicited both positive and negative expectations about varicose veins treatment and disease processes.
Positive expectations were expressed about the anticipated treatment effects on current symptoms. As one patient stated: “...more than anything is that it won’t be as it is now, so that the pain factor, the heaviness, everything that goes with it hopefully will have gone...” There were also positive expectations of the effect of treatment on prognosis, with the expectation that surgery would prevent future deterioration of symptoms and limit the extent of varicose veins. Patients either had the expectation of no possibility of recurrence, or that even a short symptom free period would be worth it. Even those with previous surgery expected that their surgery this time would work better, and that even a short symptom free period would be worth it.
Negative expectations were held of the disease prognosis if treatment was not given. An important motivation for treatment was that deep vein thrombosis (DVT) and ulceration could occur later because of their varicose veins. A particular concern was that varicose veins could exacerbate the risks of flying on development of a DVT. Negative expectations about the adverse events of surgery were also stated. Fear of surgery was common: “....I’m in the middle now. I’m frightened of having them done and I’m frightened of having them...”
Darvall 2009
This questionnaire survey aimed to assess the expectations of treatment effects in 282 patients prior to treatment. This study involved 373 legs, and expectations of symptoms were presented in terms of numbers of legs, presumably because differing levels of severity across legs in a single patient might lead to differing levels of expectations about symptom improvement. Most data were presented in low resolution graphs, and so the tabular data below are approximate.
A significant improvement in overall symptoms as a result of treatment was expected by patients in 33% of legs, and a moderate improvement was expected in 67%. The detailed expectations data for individual symptoms are given below in Table 10.
Table 10
Percentage of patients’ legs [n=373] associated with expectations of significant or moderate improvement in symptoms.
There were also positive expectations of how treatment would affect the appearance of the legs, and lifestyle factors such as being able to wear certain clothes. These results, presented as percentages of patients, are summarised in Table 11.
Table 11
Percentage of patients [n=282] expecting significant or moderate improvement in lifestyle. Figures are based on a low resolution graph and so are approximate.
A second questionnaire was given 6 months after surgical treatment to ascertain any mismatch between expectations and what actually happened. Table 12 summarises the percentages of legs (for symptoms) or patients (for other factors) that did not have their expectations met.
Table 12
Percentages where pre-operative expectations were not met 6 months post-operatively.
Campbell 2006
This questionnaire survey of 190 patients aimed to assess negative expectations about the anticipated course of the disease in the absence of treatment, using closed questions directing the respondent to further open comments. Overall 79% of the patients reported at least one concern or worry about their varicose veins. Table 13 summarises the fears that patients had about the future.
Table 13
Fears associated with the anticipated course of the disease [n=190].
Dillon 2005
This questionnaire study of 82 patients set out to evaluate patient expectations about the perceived risks of varicose veins, and the expectations of surgery. Significant personal anxiety caused by having varicose veins was reported by 41% of respondents. Table 14 summarises the perceptions of varicose vein risks and Table 15 summarises the expectations of surgery.
Table 14
Perceptions of varicose veins risks [n=82].
Table 15
Expectations of surgery [n=82, unless stated].
Shepherd 2010
This questionnaire survey of 111 patients presented much of its data in low resolution graphs, and so the data given below are approximate. The study showed that 36/99 (35%) of respondents were “extremely concerned” about recurrence, and 16/101 (16%) were “extremely concerned” about discomfort after treatment.
With regard to treatment options available:
- 86% were aware of surgery as an option
- 32% were aware of laser ablation
- 22% were aware of sclerotherapy
- 18% were aware of radiofrequency ablation.
- 10% were unaware of any treatments.
24/103 (23%) expressed a preference for endovenous treatments (i.e. endothermal or foam sclerotherapy) over surgery. Of the endovenous treatments, laser was the most popular (the first choice of 11%). 72% patients (74/103) stated that they didn’t know enough to express a treatment preference.
Zubilewicz 2009
This questionnaire study of 156 Polish women evaluated the perceptions about modifiable risk factors for chronic venous disease. The results are summarised in Table 16.
Table 16
Perceived modifiable risk factors for chronic venous disease [n=156].
In terms of the expectations of the effects of chronic venous disease, >50% of those aged <65 years assessed chronic venous disease as a severe disorder that lessened quality of life. Approximately 70% of women more than 65 years old considered chronic venous disease as especially serious. Overall, 33.3% believed that chronic venous disease was a risk factor for ulceration, but about 70% of women under 30 years regarded chronic venous disease as a primarily cosmetic problem.
5.2.1.2. Synthesis of evidence
Expectations of varicose veins natural history
Expectations generally reflected an exaggerated sense of risk from varicose veins. DVT and ulceration were deemed probable events by patients in the qualitative study77, and over half of respondents in a questionnaire study30 thought ulcers were likely. In the same study30, one third of patients also felt gangrene was a very high risk. However a higher quality qualitative study 17 revealed that only 15% feared future ulcers.
Expectations of effects of treatment
Expectations were generally that treatment would be highly effective in terms of improving symptoms. The qualitative study77 suggested that patients felt treatment would eradicate symptoms. In one qualitative study30 about 75% of patients expected improvements in symptoms, and in another 24 all patients expected at least some improvement. Interestingly, approximately 20% of patients in that study24 had their high expectations unmet.
Expectations of improvements in lifestyle 24 were more modest, with around 70% expecting improvements in the choice of clothes, enjoyment of leisure activities and performance at work, and 25% expecting an improvement in relationships. Nevertheless, the proportion with unmet expectations was similar to that for symptoms (approximately 25%).
Expectations of adverse events
Fear of surgery was expressed in the qualitative study77. Another study showed that 16% were extremely concerned about discomfort after treatment.98 21% of participants in another study 30 thought that it would take more than a month to return to work.
Expectations of treatments available
In one study, most patients were unaware of the existence of endovenous treatments.98 Most patients admitted their knowledge was insufficient to make a choice.
Perceptions of risk factors
In one study110 there was evidence of inaccurate identification of risk factors, with 17% of patients believing the use of depilatory waxes were a risk factor. 11% also thought under-floor heating increased risk. Most patients knew that being overweight was a risk factor, but only 58% were aware that pregnancy also heightened the probability of developing varicose veins.
5.2.2. Managing expectations and perceptions
Two papers17,77 made suggestions as to how patient expectations could be managed. These papers have been included in section 5.2.2, and details of their methodology are outlined in Table 17.
Table 17
Studies evaluating strategies to address patient expectations.
Palfreyman 200477 suggested that information given to patients should be based on consideration of their expectations. This view was echoed by Campbell 200617 who also explained that reassuring patients with expectations of poor prognosis might prevent many electing for intervention.
5.2.3. Communicating information
Two quantitative studies12,30 were identified that answered the review question concerning approaches to manage patient expectations. These studies assessed the suitability of two specific strategies: the informed consent process,30 or an information booklet12. One of these studies30 was the same study as described in the previous section. Quality was graded as ‘very low’ in studies, 12,30 as limitations included the lack of a comparison group and high attrition rates. Table 17 summarises these studies.
5.2.3.1. Narrative summary
Informed consent process
Dillon 200530 evaluated whether the normal informed consent process occurring during patient consultation was capable of changing unrealistic patient expectations. Table 18 summarises the changes in expectation occurring after the informed consent process. These changes were described as non-significant.
Table 18
Changes in patient expectations occurring after the informed consent process.
Information booklets
Bobridge 201112 investigated the effects of giving information booklets to patients. Many effects were reported, but only three were relevant to patient perceptions. At 6 months post-administration there were “significant improvements” in each of the following chronic venous insufficiency -related perceptions:
- worrying about chronic venous insufficiency
- feeling a sense of hopelessness about chronic venous insufficiency
- feeling nervous and tense.
5.3. Economic evidence
Published literature
No cost effectiveness evidence was identified for this question.
5.4. Evidence statements
5.4.1. Clinical
Expectations or perceptions about varicose veins disease processes and treatment
Expectations of varicose veins natural history
- Three studies comprising 288 participants suggested that an exaggerated sense of the risk of varicose veins may exist in patients [LOW QUALITY].
Expectations of effects of treatment on symptoms
- Three studies comprising 380 participants suggested that most patients expect symptoms to be improved by treatment [VERY LOW QUALITY].
Expectations of effects of treatment on improvements in lifestyle
- One study comprising 282 participants suggested that about 70% of patients expect lifestyle to be improved by treatment [VERY LOW QUALITY].
Expectations of adverse events
- Three studies comprising 209 participants suggested that patients are fearful of surgery and expect recovery to be long [VERY LOW QUALITY].
Expectations of treatments available
- One study comprising 111 participants showed that most patients had insufficient knowledge about available treatments to be able to make an informed choice [VERY LOW QUALITY].
Perceptions of risk factors
- One study comprising 156 participants showed that patient perception of risk factors were often inaccurate [VERY LOW QUALITY].
How such expectations or perceptions can be addressed
Informed consent process
- One study comprising 82 participants showed that the informed consent process was ineffective in changing patient expectations [VERY LOW QUALITY].
Information booklet
- One study comprising 26 participants showed that provision of an information booklet containing the best available evidence could help to improve varicose vein-related perceptions such as anxiety and a sense of hopelessness [VERY LOW QUALITY].
5.4.2. Economic
No cost effectiveness evidence was identified for this question.
5.5. Recommendations and link to evidence
5.5.1. Patient information at first consultation
| Recommendations |
|
|---|---|
| Relative values of different outcomes | The outcomes used in this review were any reported in the papers. The GDG considered any reported perceptions and expectations as equally important. |
| Trade off between clinical benefits and harms | The evidence reviewed suggested that people had pessimistic perceptions of the likelihood of developing complications such as ulcers if their disease progressed, high expectations of treatment success, and a poor understanding of the lifestyle risk factors for the disease. There was a scarcity of evidence on how information should be given to people with varicose veins wanting information. There are few, if any, harms from exploring perceptions and expectations at the initial consultation and by providing accurate information for people with varicose veins. There was some concern within the GDG that raising issues that had not been considered by the person with varicose veins (e.g. gangrene) may increase their anxiety. It was felt, therefore, that although misconceptions should be explored it was not necessary to introduce new factors that may cause anxiety and that information should be tailored to the person and their needs. Palfreyman 200477 and Campbell 200617 suggested that information given to people should be based on consideration of their expectations. |
| Economic considerations | The GDG expected that the impact of providing patient information on time and resource use would be minimal, and would likely be offset by an improvement in quality of life. Reassuring people with expectations of poor prognosis might prevent many electing for intervention. 17 |
| Quality of evidence | Eight studies were included in this section (1 qualitative, 7 quantitative surveys). The quality of evidence was moderate for the qualitative data (1 study). Quality was graded as low or very low for the quantitative surveys (7 studies). Survey methods are not optimal for exploring expectations and perceptions, and questionnaires may use closed and potentially leading questions. |
| Other considerations | Alongside the evidence review, the recommendation was based on the list of topics that the GDG agreed would provide useful information for people with varicose veins to supplement that found in the evidence. A key message from the evidence was that people with varicose veins had pessimistic perceptions of the likelihood of developing complications such as ulcers if their disease progressed, high expectations of treatment success, and a poor understanding of the lifestyle risk factors for the disease. There is little reliable information available in the literature on the proportion of people with varicose veins who progress to venous ulceration. One study reported that 28.6% of those who had visible varicose veins without oedema or other complications progressed to more serious venous disease after 6.6 years.83 However there was no information about the numbers progressing to ulceration. Other data on the lifetime prevalence of varicose veins estimates that approximately 3–6% of people who have varicose veins in their lifetime will develop venous ulcers.71 The GDG considered that education of healthcare professionals was an important issue. The GDG felt that a brief overview of the different treatment options was appropriate at this stage to ensure patients were aware of the options, but that a detailed description of the precise process or the risks and benefits of the options was not necessary. The evidence reviewed in chapter 6 identified a high body mass index as a factor that both increased the risk of progression to more serious varicose veins and was also a factor predicting worse outcome after treatment compared with a normal body mass index. The GDG felt that light to moderate physical activity (for example, walking or swimming) may help but that strenuous exercise may aggravate varicose veins. The evidence from Chapter 6 suggested exercise was not an independent factor either increasing or reducing varicose veins progression. Nevertheless, the GDG felt it was important to tell patients that light to moderate physical activity is safe, as the positive overall health effects of health promotion outweigh any small risks (from which there is no evidence). It is important to note that aggravating factors are individual to the person with varicose veins. The experience of the primary care members of the GDG was that people with varicose veins had often worked out what the factors were that exacerbated their symptoms and they should be advised to avoid these factors where possible. The patient should be informed that if they experience hard painful veins, skin changes, a break in the skin on their leg lasting for longer than 2 weeks or any bleeding from the varicose veins they should come back to seek further medical help. The GDG noted there was information about varicose veins was available on the internet. This could be an unreliable source of information that does not provide comprehensive information on the range of management options available and/or their adverse effects. It may be beneficial for the healthcare professional to recommend specific reliable resources if desired by the person with varicose veins. The recommendation has been developed to be specific to the information needs of people with varicose veins. The NICE patient experience guideline provides further, more generic, recommendations to improve the experiences of those using the health service and should be consulted as required. |
5.5.2. Patient information prior to treatment
| Recommendations |
|
|---|---|
| Relative values of different outcomes | The outcomes considered for this review were people’s perceptions and expectations and these were all considered equally important by the GDG. |
| Trade off between clinical benefits and harms | There are few, if any, harms from providing accurate, relevant information when discussing treatment options and exploring expectations from surgery. The evidence found suggested that with varicose veins had overly optimistic expectations of treatment success. However there were also exaggerated perceptions of adverse effects, such as prolonged periods of recovery post-surgery. People were often unaware of the possible treatments available. |
| Economic considerations | It was expected that the impact of providing patient information on time and resource use would be minimal, and would likely be offset by an improvement in quality of life. Reassuring patients with expectations of poor prognosis might prevent many electing for intervention.17 |
| Quality of evidence | Eight studies were included in this section (1 qualitative, 7 quantitative surveys). The quality of evidence was moderate for the qualitative data. Quality was graded as low or very low for the survey collected data. Survey methods are not optimal for exploring expectations and perceptions, and questionnaires may use closed and potentially leading questions. |
| Other considerations | The GDG felt that it was important that patients should have information about the risks and benefits of the treatment options so that they are fully informed before they make a decision about whether to undergo treatment. The chance that further varicose veins may develop after treatment (which were new varicose veins rather than treatment failure) and the possibility that treatment may require more than one session were felt to be important to ensure that patients had a realistic expectation of treatment success before treatment. A review of the data from the trials of interventional procedures indicates that the rate of clinical recurrence of varicose veins at 3 years is likely to be between 10-30%. One of the aspects which prevents being able to provide clear figures on retreatment rates is the fact that many of the treatments are relatively new and the long term rates have not yet been published. There is evidence to suggest that people with recurrent varicose veins have a poorer outcome following treatment than those being treated for primary varicose veins (section 6.2). The GDG noted that this was consistent with clinical experience where they found that recurrent disease was associated with a worse outcome after treatment than for primary varicose veins. The recommendation has been developed to be specific to the information needs of people with varicose veins. The NICE patient experience guideline provides further, more generic, recommendations to improve the experiences of those using the health service and should be consulted as required. |
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