Surgical management for venous leg ulcers: The role of hope,investment and agency

Abstract

A recent systematic review suggests that minimally invasive venous surgery for the treatment of leg ulcers may have a greater impact on quality of life than traditional approaches. A total of 11 participants who had previously undergone surgical management for leg ulcers took part in semi-structured interviews regarding their experiences. Using thematic analysis, three themes were identified: ‘Living in Flux’, ‘Perceptions of Chronicity’ and ‘Expectations’. Surgical treatment may not only improve patients’ quality of life due to treatment of the condition but also by opening up a sense of hope, investment and agency not associated with traditional treatment approaches.

Keywords

chronic illness healthcare illness perception surgery treatment

Introduction

Leg ulcers are a hard-to-heal wound of the lower leg, most often caused by venous disease, arterial disease, diabetes or rheumatoid arthritis. The most common cause of leg ulcers in the United Kingdom is venous disease, accounting for approximately 80–85 per cent of all leg ulcers (Simon et al., 2004). Leg ulcers have been found to impact individuals physically, socially and psychologically, with a particular emphasis on the associated pain (Briggs and Flemming, 2007). Clinicians often report lower health-related quality of life in these patients (Franks et al., 2006), and research suggests that individuals with leg ulcers score lower on tests of everyday function than their peers (Wissing et al., 2002).

Venous leg ulcers are most commonly treated in the community using compression bandaging and advanced wound dressings; however, more recently developed treatment methods include minimally invasive surgical interventions. Such interventions involve treatment to the superficial venous system, with the aim of addressing isolated superficial venous reflux, and include endothermal ablation and ultrasound-guided foam sclerotherapy (Barwell et al., 2004). While these techniques have rapidly developed over the last decade, their use is currently limited in the UK National Health Service (NHS). Evidence suggests that such surgeries may result in comparable healing rates to other leg ulcer treatments and significantly lower recurrence rates than compression bandaging alone (Gohel et al., 2007). A growing body of literature exists comparing the physical outcomes of these treatment modalities, but data regarding psychological or quality-of-life outcomes are limited and of varying quality (Malas et al., 2014; Valle et al., 2014).

A recent systematic review of the quantitative literature suggests that it is possible that both conservative and surgical treatment for leg ulcers improve patients’ quality of life to some extent, regardless of the type of treatment, but that surgical treatment may lead to improved quality of life compared to compression bandaging alone (Tollow et al., 2016). The mechanisms underlying this relative improvement in quality of life remain unclear, although this may be due to not only the outcomes of surgery being more prolonged but also the nature of the processes involved in undergoing surgery. In particular, while the ongoing routine of dressings and bandaging offers a temporary solution, as a novel and more intrusive intervention surgery may offer patients the hope of a potential shift away from their illness towards permanent healing, even if this permanence has yet to be proven (Tollow et al., 2016). This explanation finds reflection in research drawing upon a notion of mastery central to key health-related constructs such as a health locus of control, self-efficacy and perceived control (Bandura, 1997; Taylor, 1983; Wallston et al., 1978). It is also in line with studies across a number of different chronic conditions which illustrate a role for sense making in the adjustment to illness (Hagger and Orbell, 2003; Jopson and Moss-Morris, 2003; Leventhal et al., 1998) and reflects research indicating that investment in any procedure may produce better outcomes (Heinrich et al., 2014; Totman, 1976). To date, however, there has been no in-depth exploration of patients’ experiences of this treatment. Such an exploration is important as surgical management of leg ulcers has the potential to offer a significantly different psychological experience for those who undergo this treatment pathway. Therefore, this study aimed to explore the experiences of individuals who had undergone superficial venous surgery for the treatment of leg ulcers. It is hoped that such research will provide insight into the patients’ perspective of treatment and provide recommendations for future clinical practice and research.

Methods

This was a qualitative semi-structured interview study, investigating patients’ experiences of surgical management in the treatment of leg ulcers. A favourable ethical opinion for this study was granted by local NHS Research Ethics Committee (REC) and university ethics committee.

Prospective participants were recruited from a private medical clinic in the south-east of England. Previous patients of the clinic were invited by post to take part in a telephone interview, all of whom had undergone minimally invasive venous surgery for the treatment of leg ulcers more than 12 months previously. Participants were required to be above 18 years of age, to be capable of giving informed consent, to have a good understanding of written and spoken English and to have undergone venous surgery for the treatment of leg ulcer(s).

Data collection

Prospective participants were given information about the study and invited to arrange a time for the interview to take place. Ahead of the interview, participants were sent an information sheet, a consent form and a written copy of debriefing information via post. Participants were asked to complete a telephone interview in an effort to encourage honest discussion and ensure participants were as comfortable as possible throughout the interview process. A face-to-face interview was arranged if specifically requested.

The interviewers’ questions were guided by an interview protocol, departing from this when appropriate. This interview schedule covered three main topics: experiences of diagnosis (‘When did you first notice the leg ulcers?; Who diagnosed the ulcers? When?’), experiences of treatment (‘Could you tell me about your experience of surgery?’; ‘How did you feel after surgery?’) and support from others (‘What kind of support did you receive from other people when your leg ulcers first started?’; ‘How did you feel about this support?’).

Analysis

Data were transcribed verbatim and analysed using thematic analysis (Braun and Clarke, 2006). This method was chosen due to the exploratory nature of the study, and an inductive bottom-up approach was taken to analysis, with freedom from any one theory or epistemological approach. The analysis process was conducted in five steps, based on guidance by Braun and Clarke (2006) and Howitt (2010). These were as follows: ‘data familiarisation’, ‘initial coding generation’, ‘searching for themes’, ‘reviewing and refining themes’ and ‘theme definition and labelling’.

Results

A total of 11 participants were interviewed, all of whom had undergone superficial venous surgery for the treatment of leg ulcers between 12 months and 6 years prior to interview. This surgery included endovenous laser ablation and/or foam sclerotherapy. One participant requested that his spouse participate in a dyadic interview due to hearing difficulties, and it was agreed that this would be appropriate. Participants were evenly split in gender (six females; five males), aged 48–87 years (mean age = 71 years) and mean leg ulcer duration was 91 months (range = 3–480 months). One participant considered his or her leg ulcer to be ‘unhealed’, three participants considered their leg ulcer to be ‘healed, and expect to return’ and seven participants considered their leg ulcer to be ‘healed, and don’t expect to return’ (Table 1). All participants had received ‘traditional’ or ‘conservative’ treatment prior to surgical treatment. In all, 10 participants were interviewed via telephone, and 1 via face-to-face interview.

Table 1.

Participants’ demographic information.

Pseudonym	Gender	Age (years)	Leg ulcer duration (months)	Approx. time since surgery (at time of interview) (years)	Patient perception of ulcer status
John	Male	48	48	1–2	Healed, don’t expect to return
Diana	Female	69	96	5+	Healed, don’t expect to return
Harry	Male	70	3	3–4	Healed, expect to return
Margaret	Female	60	480	4–5	Healed, expect to return
David	Male	84	36	3–4	Unhealed
Viv (Spouse)	Female	82	–	–	–
William	Male	82	72	1–2	Healed, expect to return
Gloria	Female	77	11	2–3	Healed, don’t expect to return
Linda	Female	67	36	1–2	Healed, don’t expect to return
Edward	Male	81	96	3–4	Healed, don’t expect to return
Carol	Female	57	8	1–2	Healed, don’t expect to return
Lynn	Female	87	120	1–2	Healed, don’t expect to return

Three primary themes were identified: ‘Living in Flux’, ‘Perceptions of Chronicity’ and ‘Expectations’. These encapsulate participants’ experiences of surgery, with particular reference to the timeline of treatment and a mismatch between participants’ expectations of treatment and the reality.

Theme 1: living in flux

Participants described the ambiguity surrounding their leg ulcers prior to surgery and the impact this had on their lives. Patients’ quality of life was negatively impacted by their leg ulcers, and this impact was worsened by the changing nature of leg ulceration. The changeability of symptoms and the recurrence of ulcers felt unpredictable, and this led to a higher psychological toll on participants. Many participants described a tipping point where normal functioning was interrupted to an extent that they were motivated to seek alternative treatment; while many participants received practical support and care from those around them, they did not identify these people with the label of ‘carer’. This state of ‘flux’ that patients lived with was expressed in three subthemes: ‘uncertainty’, ‘tipping point’ and ‘relationships’.

Uncertainty

Participants discussed the anxiety that accompanies leg ulceration in terms of a constant consciousness of the ulcer, and in many cases, this anxiety was due to uncertainty about the long-term prognosis of the condition prior to surgery. The physical impact of leg ulcers appeared to be closely linked to this psychological impact, and participants discussed how the psychological impact of leg ulcers was worsened by their changing nature and recurrence, making the impact unpredictable and harder to deal with:

It’s got worse and then it gets better again, it goes up and down … You think ‘Oh my god, it’s gone!’, and it hasn’t gone, it’s still ticking away there and waiting to come back again. (William)

Due to this uncertainty, participants experienced continued anxiety regarding leg ulcers, even in ulcer-free time, suggesting a more enduring impact than has previously been explored in the literature.

Tipping point

Participants also described the psychological impact of ulceration, prior to surgery, in terms of severe depression, with some participants describing feeling ‘almost feeling suicidal’ (Linda). As the impact of leg ulcers worsened, many participants described a ‘tipping point’, when the severity of this impact motivated them to seek alternative treatment options. For Lynn, this tipping point came at Christmas:

I’d spent the whole of the Christmas in bed … I was hiding away, it wasn’t really doing me any good, it was just the only place I wanted to be where I couldn’t … nobody bothered me, I didn’t have to bother to talk or be cheerful. (Lynn)

It was at this point, ‘in desperation’, that Lynn and her family sought alternative treatment for her leg ulcers.

Relationships

Relationships with the individuals around participants were felt to be influenced by the extra support that some participants required due to their condition. Some participants reflected on a reluctance to ask others for help, either because they felt independent enough that help was unnecessary or because they considered themselves to have a personality that made asking for help difficult. In contrast, others readily accepted help from those around them. Describing how valuable this support was during surgical treatment and suggesting that this support often negated the need for paid help:

Thanks to the fact that I have a very attentive wife who looks after me, I don’t have any outside help. (Edward)

Importantly, while these participants cared about participants or provided them with help doing day-to-day tasks, participants felt the label of ‘carer’ was not appropriate:

He cares, but he wouldn’t call himself a carer. (Edward)

This is potentially due to the reciprocal nature of this care or its consideration as an extension of existing roles and relationships:

I feel that we love each other and that’s what we do for each other. If it was the other way round I’d do the same, you know, we look after each other. (David)

Theme 2: perceptions of chronicity

Throughout their narratives, participants often described the extent to which they felt their condition had a chronic or acute trajectory. Participants’ perceptions appeared to change and develop as they journeyed through diagnosis, treatment and outcomes. Prior to treatment, participants appeared to expect an acute diagnosis. This did not match up with the chronic timeline that clinicians presented, leading them to reject this characterisation and the accompanying treatment plan. A more acute approach was sought and found in surgical management; however, participants’ feelings after surgery appeared to fall into three varied groups, characterised by feelings of empowerment. In order to demonstrate this journey, participants’ perceptions of chronicity can be viewed in three subthemes: rejection of chronic characterisation, acute approach and looking forward.

Rejection of chronic characterisation

Upon diagnosis, some participants had prior knowledge of leg ulcers, often from experiences with family or friends. All, however, initially expected that the problem was acute and treatment would be straightforward. When participants were presented with a treatment plan that appeared to be based on a ‘chronic’ characterisation of their condition, they described rejection of this characterisation and the idea of a ‘passive’ treatment plan to manage the condition.

All participants initially proceeded with a conservative treatment plan, often until they observed that a period of time had gone by with little progress or improvement in their symptoms:

They couldn’t give me a time limit … they were quite happy just for me to go down there, take the dressings off, re-dress it, go back another day and have the same thing done … It was getting me quite frustrated. (Gloria)

This resonates with the ‘tipping point’ subtheme discussed earlier and may suggest a point at which participants realised there was a mismatch between their more ‘acute’ characterisation of the condition and the ‘chronic’ characterisation that the treatment suggested, leading participants to seek alternative treatment methods.

For other participants, the rejection of their condition as ‘chronic’ was more immediate, for example, John recalls this realisation as occurring in an early consultation:

I suppose I was looking for a plan that they could give me to say ‘right you’ve got this now, this is what we’re going to do and this is when you’re going to get better, and this is when you don’t need to worry about it anymore, but they didn’t say that. They said ‘here’s a prognosis, you’re going to have to learn to live with it’ … I just thought ‘well there’s got to be a better way, there’s got to be more to this than what I’m hearing. (John)

For John, his beliefs that the leg ulcers were an acute condition led to an immediate rejection of the proposed treatment plan, and instead he sought an alternative treatment approach that matched his own illness beliefs.

Acute approach

The ‘acute’ characterisation of their condition, described above, left many participants frustrated with conservative treatment and led them to seek a treatment approach that also characterised their condition as ‘acute’. Participants appeared to seek a treatment method that would provide a ‘cure’ and many trialled various different treatments before exploring surgical treatment. Participants often discussed prior use of various advanced wound dressings or Manuka honey, and sought the advice of many different healthcare professionals. When these treatments were unsuccessful, many participants experienced feelings of ‘desperation’, and John describes this search for alternative treatment as wanting his ‘feelings of optimism validated’ (John).

Participants’ ‘acute’ perceptions of their condition appeared to have been legitimised by the clinicians they met during surgical treatment:

They would not accept there was nothing you could do, and would not accept that there wasn’t any long-term outcome that would reinstate the quality of life that you had before, or as near to it as you could get. (John)

Participants’ positive evaluations of these clinicians’ attitudes seemed to be the result of a harmony between the patients’ illness beliefs and the approach offered by surgical treatment.

Looking forward

Participants’ expectations for the future post-surgery appeared to lay in three distinct groups, which differed with regard to their expectations regarding the future for their condition and their confidence in the efficacy of surgical treatment. No clear patterns were observed between these three groups in terms of demographics or treatment history.

The first of these groups had maintained an acute characterisation of their leg ulcer post-surgery, stating with some certainty that surgical treatment had been successful and they did not expect the condition to return:

In my mind, as far as I’m concerned, it’s not a problem anymore. (Carol)

For this group, surgery had validated their belief that their condition was acute, and they were not contemplating the possibility of recurrence.

A second, smaller, group of participants had all experienced a recurrence in their condition after venous surgery and were resolute in their feelings that the treatment they received was not effective. The long-term effects of these feelings can be seen in William’s account indicating that had moved towards a more ‘chronic’ characterisation of his leg ulcers:

I don’t think I will ever get rid of it, having had it for so long now, I think I’ll have it forever. (William)

As a whole, this group appeared to have been disempowered by the return of the condition after treatment and this influenced their beliefs regarding the chronicity of their condition.

In great contrast to this second group, a third group of participants depicted mixed beliefs regarding the likelihood of recurrence, but remained positive about the surgical treatment they had received. This group was the largest, and all describe feelings of empowerment to receive further surgical treatment if their leg ulcers were to return:

I don’t need to go down into the depths again, as soon as I feel like there’s something that’s not quite right … there’s always [the clinic]. (Lynn)

While these participants did not rule out the possibility of the leg ulcers returning, they appear to maintain an acute characterisation of their condition through their belief that they could be easily treated through further venous surgery if necessary.

Theme 3: expectations

Participants often described a mismatch between their expectations and their experiences. They described perceived differences between their own identity and the identity of someone with leg ulcers, as well as vast differences between their expectations of treatment and their experiences, suggesting that a difficulty reconciling these differences may have driven their approach to treatment. These differences between expectations and experience were particularly evident across two dimensions: Identity and Treatment.

Identity

Participants discussed the discrepancy they felt between their perceptions of self and their condition, suggesting that their identity did not fit with that of someone who has leg ulcers. Upon diagnosis, this discrepancy between John’s identity and his illness had caused difficulties, as he recalls thinking upon diagnosis:

I don’t get ulcers, that’s what old people get, you must be wrong. (John)

Differences between participants’ identity and their illness were particularly salient around the issue of age. Participants believed that they were too young to be limited by their illness and suggest that this discrepancy may have driven their approach to treatment:

Some people might be able to put up with it, I don’t know, but I wasn’t. I mean, I’m only 77 years of age and I still wanted a life, so this is one of the reasons I kept onto them, saying ‘what more can I do?’ (Gloria)

However, while participants used their age to justify gaining a better quality of life through surgical treatment, this was not necessarily the case in terms of cosmetic results from treatment. When discussing the option to have further surgical treatment to treat the cosmetic elements of their leg ulceration, participants often dismissed this as unnecessary due to their age:

I think at my time of life I’m not going to worry too much. (Gloria)

Treatment

Differences between participants’ expectations from treatment and the reality of their experiences were apparent throughout the data. Such differences can be seen reflected in the earlier theme ‘Perceptions of Chronicity’, as participants’ own illness timeline often did not match that of the proposed treatment:

I could see myself another year or eighteen months still doing that sort of thing, and I just couldn’t face that. (Gloria)

In addition, participants suggested that the approach of conservative treatment methods did not match their expectations and expressed their disappointment with this:

That’s like going back 150 years, that’s what they said then, it’s not what they’re supposed to say now. (William)

The distance between participants’ expectations of treatment and their experiences were more strongly conveyed through their criticisms of national treatment provision. Some participants reported a micro-level problem with treatment provision, while the majority of participants also discussed issues with treatment on a national or macro-level; believing leg ulcer treatment is marginalised or not appropriately prioritised by national treatment providers:

I just felt like I was a nuisance. (Margaret)

Many participants had also considered the comparative cost of treatment and their frustration at not being able to access it via the NHS.

Discussion

This study aimed to explore patients’ experiences of superficial venous surgery for the treatment of leg ulcers. Three themes were identified from participants’ narratives, these were as follows: ‘Living in Flux’, ‘Perceptions of Chronicity’ and ‘Expectations’.

Participants’ illness narratives about their time prior to surgery were characterised by a state of ‘flux’. They discussed the impact of leg ulcers on their quality of life, supporting existing literature on the topic (Briggs and Flemming, 2007) and extending this impact to ulcer-free time. Participants suggest that the changeable nature of their symptoms and the recurrent nature of the condition led to an uncertainty around their condition and an increased impact on their quality of life. Such impact often climaxed in a ‘tipping point’, leading them to seek alternative treatment and reduce these feelings of uncertainty. This finds reflection in research exploring sense making in chronic conditions and indicates that conditions which show substantial variability may be more difficult to adjust (Heijmans et al., 2004; Moss-Morris, 2013). This uncertainty and state of flux also has implications for the notion of care and carers. In particular, results from this study indicate that those who provide informal care for participants do not necessarily identify with the label of ‘caregiver’ and view their support as an extension of their relationship with the individual. This reflects existing literature which indicates that while the terms ‘caregiver’ or ‘carer’ are often used by researchers and support networks, these labels are mostly adopted by individuals only as a result of contact with external bodies (O’Connor, 2007; Ugalde et al., 2012).

Participants also considered their condition in terms of chronicity and in particular rejected leg ulcers as a chronic condition, describing frustration with a lack of progress when undergoing conservative treatment and a search for a more ‘acute’ approach to treatment. While the term ‘chronic’ implies a condition that they may live with for the rest of their lives, participants were seeking a treatment approach that would effectively ‘cure’ them of the condition, an important characterisation that in turn influenced the treatment approach that patients adopted. Previous research has suggested that the psychological impact of leg ulcers may be influenced by whether health professionals encourage patients to consider leg ulcers as a ‘chronic’ or ‘acute’ condition (Briggs and Flemming, 2007), reflecting recommendations in the wider psychological literature that different treatment approaches should be adopted dependent on whether a condition is considered chronic or acute. The results of this study suggest that the dichotomy between chronic and acute conditions may well be a simplification of the illness experience and is more in line with the notion of a ‘cyclical’ timeline (Moss-Morris et al., 2002). The results also have implications for the decision-making process and how patients own beliefs are taken into account when making treatment decisions.

The final theme related to inconsistencies between their expectations of treatment and the reality that they faced. Participants criticised both the national approach to leg ulcer treatment and their own experiences and describe differences between their own identity and that of a person with leg ulcers. Participants were motivated to seek an alternative treatment pathway in order to reconcile these differences and align their expectations with reality. This may represent an important mechanism in the treatment journey of leg ulcer patients, as while bandaging treatment was viewed as a low-status and repetitive intervention, the offer of surgical treatment created renewed faith in medicine.

Participants therefore approach surgery in terms of flux and challenge the notion of chronicity. Furthermore, they highlight inconsistencies between their expectations of treatment and the reality. Transcending these themes are the notions of investment, hope and agency. In particular, while conventional management approaches are seen as low status, the process of surgery reflects a sophisticated high-status intervention which involves a sense of investment and offers a chance for empowerment to pursue further treatment. This in turn generates a sense of agency and hope, which is in stark contrast to participant’s beliefs prior to surgery. This reflects research indicating both that healing from surgical treatment may represent more ‘active participation’ (Criddle, 1993) and that interventions which require greater investment have a greater impact on patient outcomes (Heinrich et al., 2014; Totman, 1976). If this ‘active participation’ is influential in leg ulcer patients’ beliefs about their illness after treatment, then this highlights how the experience of the treatment pathway itself may impact patients beyond physical outcomes. One could also ask whether surgical management is the only means by which patients could gain a feeling of ‘active participation’ in their treatment, whether ‘conservative/traditional’ treatment for leg ulcers ever elicits a similar response, and which elements are important in this process. Investigation of such mechanisms requires further research and may be viewed in terms of notions of mastery and sense making across a number of theoretical domains (Bandura, 1997; Taylor, 1983; Wallston et al., 1978).

When examined as a whole, the themes identified in this research represent a distinct element of the surgical treatment process for these patients. Through surgical management, patients feel that they are able to reduce the uncertainty associated with this condition and gain control. They are able to make active choices regarding their treatment and many feel empowered to act again if the condition were to recur. As such, while participants had been seeking a ‘cure’ for their condition, the possibility that their leg ulcers may recur did not detract from their sense of agency in the same way as it had previously. In this sense, the experience of surgical management offers a qualitatively different psychological experience to traditional treatment approaches for leg ulcers – and through investment offers patients a sense of hope and agency that goes beyond physical outcomes.

Limitations

Many participants related their motivation to take part in this study to negative feelings regarding national treatment provision for leg ulcers. This may indicate a sample of particularly motivated individuals who may also be more motivated to adopt an active approach to treatment than the general leg ulcer patient population. This increased motivation is also evident in their seeking of private medical treatment for their condition, and it could be suggested that a sample recruited from private healthcare may occupy a different demographic than the general population. However, observations by the researchers suggest that these participants’ motivation to seek private healthcare may be more closely linked to the limited availability of equivalent treatment on the NHS than their demographic profile.

It is unclear to what extent patients’ beliefs about their condition were influenced by their contact with surgical management and which beliefs were present beforehand. This must be considered when interpreting results, and future research may benefit from conducting a series of interviews with participants throughout the treatment journey. An additional area of research may be the comparative cost of prolonged conservative treatment for leg ulcers versus surgical management. While participants reported frustration that surgical treatment for leg ulcers was not more widely available on the NHS and discussed comparative treatment cost, little research appears to have been published exploring this issue and this is a promising research area for health economics.

Conclusion

In conclusion, recent research indicates that the surgical management of leg ulcers may have a greater impact on patients’ quality of life than more traditional approaches. This study provides some insights into why this may be the case. Patients’ beliefs regarding the timeline of their condition may be in contrast to medicine’s traditional characterisation and treatment of the illness, impacting their treatment beliefs and experiences of treatment prior to surgery. The findings of this study suggest that this mismatch motivates patients to seek out surgical management, which through the investment needed in the surgical process in turn promotes a sense of agency and hope that is not associated with traditional treatment options.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by funding from The Leg Ulcer Charity (UK registered charity: 1152113) and The Marcela Trust (UK registered charity: 1127514).

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