Carolyn C. Johnstone, BSc (Hons), MSc, RN, CMS, PGDip.
Lecturer in Nursing, School of Nursing and Midwifery, University of Dundee, Dundee
This review will explore the literature surrounding the experience of living with peripheral vascular disease (PVD). According to Crosby et al (1993) ‘PVD encompasses occlusive disease of the arterial, venous and lymphatic systems’, whereas the condition most commonly presented is peripheral arterial occlusive disease (PAOD). In the author’s area of clinical practice the term PVD is used, so this will adopted in this paper.
PVD is a chronic progressive disease (Turner, 1986), usually presenting as chronic lower-limb ischaemia (Sanchez and Veith, 1998). It is characterised by increased wound infection risk, the inability to tolerate normal activity, and pain (Siedlecki, 1992). In a study on the quality of life after lower extremity revascularisation, Holtzman et al (1999) found that 63% of participants had died within seven years of the surgery. Death is often related to other causes, owing to the high incidence of coronary artery and cerebrovascular disease in patients who have PVD (Holtzman et al, 1999; Golledge, 1997).
PVD is a common condition that affects about 20% of men over 50 years of age (Scottish Intercollegiate Guidelines Network, 1998). It can also affect people in middle age (Bryant and Turkoski, 1999), but incidence increases with age (Ouriel, 2001). Leng et al (1996) report an incidence of 8% for significant symptomless disease and 4.5% for evidence of claudication in the 55-to-74-year-old age group.
The search strategy
The literature survey involved a search of the Applied Social Sciences Index and Abstracts (ASSIA), Cinahl, Medline, Psychlit, the Cochrane library and the National Research Register databases. No search limitations were applied, because it was felt this could result in overlooking important material in an under-researched topic area.
The initial search terms were ‘peripheral vascular disease’ and ‘peripheral arterial disease’. However, this returned a limited number of relevant papers only, so the search terms were widened, resulting in the omission of the world ‘peripheral’. Finally, the terms ‘quality of life’, ‘lived experience’ and ‘life experience’ were applied.
The Journal of Wound Care was hand-searched from its first issue in 1992 up to the latest issue at the time the search was undertaken. The Journal of Vascular Nursing was also searched via its website, which provided access to abstracts of the catalogue dating back to March 1997.
Living with PVD
Despite the prevalence of this disease, little has been written about the experience of people living with it. When Gibson and Kendrick (1998) explored the issue they found that people’s lives were blighted by pain and their overall experience was one of powerlessness. A number of studies examined the issue by applying measures such as SF36 and the Nottingham Health Profile (Feinglass et al, 2000; Klevsgard et al, 1999; Beattie et al, 1997; Currie et al, 1995; Pell, 1995). Feinglass et al (2000) also used the walking-impairment questionnaire, a claudication-specific measure of quality of life.
While these studies all showed that quality of life was impaired, there was limited exploration of the patient’s life experience. Morgan et al (2001) developed a vascular-specific quality-of-life measure that is more detailed than the walking-impairment questionnaire. It looks at issues such as pain, feelings and concerns about disease progress, as well as mobility. This measure goes some way towards describing the experience of living with PVD in terms of quality of life. Treat-Jacobson et al (2002) carried out a quality-of-life study into PVD that sought to explore the patient’s perspective. They reported a list of seven themes that were important to quality of life. These were:
- Diagnosis and management
- Symptom experience
- Limitations in physical functioning
- Limitations in social functioning
- Compromise of self
- Uncertainty and fear
Gibson and Kendrick (1998) also used themes to describe the experience of living with PVD. The themes were pain, powerlessness, someone else’s problem and shrinking horizons. ‘Someone else’s problem’ is defined by Gibson and Kendrick (1998) as relating to the fact that most participants had complete faith in the health care they received; they viewed surgery as a cure and were initially unrealistic about the outcome.
There are many similarities between the themes outlined by Gibson and Kendrick (1998) and Treat-Jacobson et al (2002). Pain emerged as a major feature of living with PVD. Individuals with PVD can have chronic, acute or intermittent pain. The latter is a feature of claudication and is characterised by the sudden onset of pain during physical activity such as walking (Goodall, 2000). Pain arising through intermittent claudication is resolved by stopping the activity causing it. Often, after a few minutes’ rest, the person can resume walking (Dumas, 1995).
Impaired mobility is also cited by both Gibson and Kendrick (1998) and Treat-Jacobson et al (2002) as a feature of living with PVD. The patient’s mobility becomes increasingly restricted, leading to major limitations on daily life. It restricts their ability to participate in social activities, resulting in them becoming progressively more isolated. In addition to impaired mobility, Gardner and Montgomery (2001) report that having PVD greatly increases the risk of falling, which may exacerbate the feelings of fear and uncertainty reported by Treat-Jacobson et al (2002). Pain, combined with immobility, is a major concern for people with PVD (Treat-Jacobson et al, 2002; Gibson and Kendrick, 1998; Cantwell-Gab, 1996; Dumas, 1995; Turner, 1986). Coping with, and managing, life situations is as much a feature of living with PVD (Klevsgard et al, 1999), as it is for those living with other chronic illnesses.
PVD is a chronic illness that is routinely treated in the acute setting (Gibson and Kendrick, 1998). This suggests that more understanding of the chronic nature of this disease is required by health-care professionals (Newby, 1996).
Central to the experience of living with PVD is a feeling of lack of control or powerlessness over disease progress. Treat-Jacobson et al (2002) describe loss of control, along with major limitations in physical and social functioning, as aspects that affect the whole person and lead to feelings of inadequacy. Such feelings are highlighted in the case study (Box 1). Power and control is lost and appears to be replaced with a sense of acceptance of the inevitability of the alterations required in the way that daily life is led. Arseven et al (2001) report a possible link between living with PVD and feeling depressed, although they acknowledge a number of limitations in their study.
Shrinking horizons is the term used by Gibson and Kendrick (1998) to describe the adjustments made by those with PVD in terms of their daily lives. This relates closely to the limitations in social and physical functioning described by Treat-Jacobson et al (2002). Klevsgard et al (1999) describe feelings of restriction, associated with mobility, as being closely related to quality of life. Jerrett (1994) describes the phenomenon of adjusting to life with chronic illness as involving a permanent change in lifestyle or a reappraisal of expectations related to purpose and well-being.
Ekers (1986) describes PVD as having physiological, psychological and sociological effects. The latter relate to the wider aspects of the person’s life, such as the impact on family and carers. Social interactions are a feature of quality of life. Seabrooke et al (1999) expand this by stating that it is the individual’s own perception of social interaction that must be considered when assessing life with PVD. Bennett (1994) adds that physical illness not only affects family life and relationships with friends but can also pose economic difficulties. Treat-Jacobson (2002) found that those with PVD might experience feelings of becoming a burden to the family owing to their limited abilities. Family roles may change, with the spouse having to take on increased work while also providing support, both emotional and physical, to the patient (Payne and Ellis-Hill, 2001).
Chronic illness in mid-life may result in major alterations in life expectations (Catanzaro, 1990). The person may not cease employment entirely, but is likely to face changes that result in less pay and reduced social standing (Catanzaro, 1990). Retirement on medical grounds often means that work peers are lost as friends. We often define ourselves in terms of our employment, but this may be lost to the person with a chronic illness. As PVD - along with other atherosclerotic disorders - is increasingly evident in the 45-60 age group, issues surrounding the importance of employment may become more relevant when caring for PVD sufferers.
Little evidence was uncovered relating to the experience of the carer in PVD. Carers give both emotional and physical support to chronic illness sufferers (Payne and Ellis-Hill, 2001). However, the impact on the lives of the family is often under-rated by professional carers (Price, 1996). Leavitt (1990) adds that the families of patients with PVD often underestimate the implications of the illness. The partner of a chronic pain sufferer may face a range of financial and emotional difficulties.
Disease processes that result in chronic pain often necessitate alterations in employment and associated changes in family finances. This may involve the partner having to take on extra work to supplement the family income. Along with this, the partner will be dealing with the emotional distress and physical restrictions the disease and/or the pain bring (Schwartz and Slater, 1991).
Catanzaro (1990) sums up the impact of chronic illness on intimate relations as being caused by increased physical disability and reduced self-esteem. For the person with chronic pain intimate relations are often the source of discord. Schwartz and Slater (1991) found that patients with chronic pain and their partners often reported marital and sexual dissatisfaction. In addition, Hooi et al (2001) reported a link between symptomatic and asymptomatic PVD and erectile problems, possibly resulting from penile ischaemia. Professionals caring for patients with PVD may, therefore, benefit from education in dealing with issues related to intimate relationships.
The management of PVD
Many aspects of treating PVD have been explored and documented in detail. A multi-agency approach is essential, as patients may require advice and support in relation to issues such as diabetes, chiropody, nutrition and diet, exercise, smoking and medications (Goodall, 2000; Hiatt, 1997). The main nursing actions required are listed in Box 2.
The most significant modifiable risk factor in terms of PVD is, without doubt, smoking (Christman et al, 2001; Cote, 2000). The majority of those presenting with PVD are smokers at the time of diagnosis and, despite the risks, many continue to smoke after diagnosis (Ronayne et al, 1989). Failure to stop smoking is associated with disease progression and increased risk of amputation (Christman et al, 2001). Therefore, smoking cessation is one of the central issues in the management of PVD (Cote, 2000). Providing patients with support and education to enable them to stop smoking could prove vital for a successful outcome. But if smoking cessation is to be successful it must be a goal for the patient and not simply the nurse (Cote, 2000; Turner, 1986).
Carefully supervised exercise programmes can help patients with PVD to improve their fitness and increase physical function. Walking distance can be improved to such an extent that it is a cornerstone of the management of intermittent claudication (Christman et al, 2001; Tan et al 2000). Smoking cessation and exercise training are closely linked and failure to stop smoking will diminish any benefits of exercise therapy (Siedlecki, 1992). Consequently, people with PVD undergoing conservative management require the combination of exercise therapy and smoking cessation support (Christman et al, 2001). Cardiac health may be a factor when introducing the patient to a new form of exercise, and it may be necessary to assess cardiac function to appropriately tailor a programme of exercise.
Implications for practice
Caring for patients with PVD requires a multi-agency approach and nurses can be pivotal in co-ordinating this approach (Box 3). Care needs to move beyond the acute setting and move towards supporting patients in their own environment. A nurse (perhaps in a specialist role) could develop a service that meets the needs of patients with PVD both at home and in hospital.
Carers need to be valued as a crucial part of the patient’s life. Nurses have the opportunity to take the lead role in developing carer support and involvement.
Potential further research
Further research into living with PVD is required to define the experience. Research also needs to be disseminated as widely as possible owing to the prevalence of this condition. The role of the carer in PVD also merits investigation. There is an increasing volume of literature related to carers in general, but the experience of the carer in PVD remains under-researched. The role of the nurse in caring for patients with PVD also warrants further investigation. Murray (1997) outlines how specialist nurses could run nurse-led clinics for PVD patients.
Living with PVD is associated with pain, impaired mobility and loss of control. There are also major implications for the activities of daily living that most of us take for granted. Patients with PVD have major worries related to the progress of the disease and fear the risk of amputation (Treat-Jacobson et al, 2002). Overall, they have to adapt and adjust to major lifestyle changes and often to the loss of what was central to them as an individual.
PVD affects almost every aspect of a patient’s life (Box 4). Caring for the PVD patient is potentially a concern of nurses working in all areas and requires understanding of patients living with a chronic illness and their carers.
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