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Psychosocial Aspects in Patients With Chronic Leg Ulcers
Abstract
Chronic leg ulcers persist for > 6 weeks and show no tendency to heal after 3 or more months. They can be distressing to patients, both directly through physical symptoms caused by the disease and indirectly through limitations on work capacity, social activity, and personal hygiene. The quality of life (QoL) of patients with leg ulcers can be impaired by a complex set of aspects. Restrictions in their ability to perform paid employment, handle household duties, and engage in personal hygiene adversely affect patients’ QoL. Patients with chronic leg ulcers frequently experience negative emotions such as shame, embarrassment, and loneliness, and they present higher levels of depression and anxiety compared with healthy individuals. When the expected healing results do not occur, these patients feel as if they have no control over their condition; this ongoing frustration leads them to feel depressed. The ulcers contribute to anxiety and psychological stress, creating a vicious, difficult-to-manage circle. This review aims to describe the negative psychosocial impacts on patients with chronic leg ulcers and emphasize their impaired QoL.
Introduction
Chronic leg ulcers can be defined as ulcers that persist for > 6 weeks and show no tendency to heal after 3 or more months. They constitute an underestimated public health problem. The prevalence of leg ulcers is between 0.18% to 1.5% of the population, and this is rising as a result of the aging population.1 Chronic leg ulcers occur mostly among the elderly, with few cases seen in people < 60 years of age.2 They result mainly from venous (70%–80%) and arterial (10%–15%) disorders.3 Lesions resulting from venous insufficiency and lower limb atherosclerosis usually are chronic and progressive. Diabetes mellitus, rheumatoid arthritis, trauma, chronic osteomyelitis, vasculitis, and skin tumors are other causes of chronic leg ulcers. Ulcer treatment takes a long time and healed wounds often recur; the recurrence rate is 30% in the first year and 78% in 2 years.4 Chronic leg ulcers can be distressing, painful, prone to infection, and malodorous. They greatly reduce a patient’s quality of life (QoL), both directly through pain and indirectly through limitations on work capacity, social activity, and personal hygiene.
A literature review was conducted to describe the impact of leg ulcers on patient QoL. As there are few studies available on the QoL of patients with chronic leg ulcers, the authors additionally reviewed anxiety, depression, loneliness, and social isolation in patients with ulcers. Venous ulcers were mainly reviewed due to their larger, more visible, and more painful attributes than neuropathic foot ulcers, which do not have as much impact on patient QoL due to the lack of pain and an ability to hide ulcers in a shoe.
Chronic Leg Ulcers and QoL
The negative impact of chronic leg ulcers on patient QoL is sporadically documented in the literature. Although chronic leg ulcers are not a direct threat to life, they can deteriorate patient QoL because of their association with changes in outward appearance and self-perception. The progressive and chronic character of the condition affects the most important spheres of human life: physical, psychosocial, and emotional. Ulcers are accompanied by numerous symptoms including pain, pruritus, joint deformation, swelling, discharge, and unpleasant odor. These symptoms can diminish QoL by restricting physical activities, influencing mobility, causing sleeplessness, depressed mood, and limiting professional, social, and familial relationships.5-7
Malodorous leg ulcers have a negative effect on a patient’s social life and lead to an impaired QoL.8,9 At times, patients reported not leaving home when dressings were soaked with wound fluid since they felt embarrassed about ulcer leakage and unpleasant smell, finding it difficult to maintain dignity and outward appearance.10 In 2004, Wilson11 demonstrated that the need for frequent dressing changes cause reluctance to stay outside the home, which may lead to further social isolation. Furthermore, ulcer pain often occurred at night and prevented patients from getting a full night’s sleep.12,13 Sleeplessness was a major source of exhaustion and worry.
Pain was described in several studies8,13,14 as the worst thing about having an ulcer despite other important medical problems.A larger ulcer correlated with an increased pain intensity,8 which restricted physical activities such as walking.15 As a result, patients were going out less frequently and losing contact with relatives and friends despite also feeling more dependent on them. In 2 quantitative studies,8,14 mobility restrictions were described as the second worst thing about having an ulcer. These restrictions also affected work capacity, particularly among younger patients, and correlated with time lost from work and job loss. The disease and its complications enforce modification of previous professional roles. Szewczyk et al16 showed that due to their condition, 50% of patients had to retire from their professional activities while 85.7% had to temporarily quit their jobs. On the other hand, inappropriate therapies for ulcers often resulted in prolonged and expensive treatments, significantly burdening the already reduced patients’ budgets. A study on the financial impact of leg ulcers revealed that in young, working patients, leg ulcers correlated with time lost from work, job loss, and adverse effects on finances.17 Consequently, the combination of a limited income and the personal expenditures associated with treating and managing the disease lead to a significant financial impact.
Daily activities such as preparing meals or carrying out housework also can be affected in patients with leg ulcers, causing problems with upkeep of the home. Becoming more dependent on partners and friends can provoke a feeling of guilt in some patients.13 Patients reported difficulties in washing and bathing since they were worried that the ulcer would get wet, disturbing the healing process; the fear prevented them from conducting personal hygiene.8,13,18
A recent study by Szewczyk et al3 showed that ulcers exerted a significantly stronger negative effect on patient QoL and functioning in the physical sphere as compared with an ulcer-free patient. In particular, Palfreyman19 reported that patients with venous ulcers experienced reduced QoL compared with the general population; similar findings were reported by Phillips et al17 in 1994. There was a strong correlation between time spent on ulcer care and feelings of anger and resentment. In this study,17 68% of patients reported that the ulcer had a negative emotional impact on their lives, including feelings of fear, social isolation, anger, depression, and negative self-image, leading to the conclusion that leg ulcers pose a substantial threat to a variety of dimensions of patient QoL.17
Another case control study7 of 102 patients with chronic leg ulcers and 102 healthy, age- and sex-matched volunteers demonstrated a significant impairment in QoL. Female
patients presented with worse QoL, which could be explained by the fact that leg ulcers are visible, making women feel unattractive and unfeminine. Patients with leg ulcers tend to reduce their contact with friends and family, feeling embarrassed by their visible skin lesions. Other authors revealed that patients with ulcers tried to hide their affected limbs by wearing long pants and socks, confirming the negative impact on patients’ emotional sphere.13,17,20
In addition, family members can experience a significant impact on their lives. This impact depends on the duration and the severity of the disease, the treatment that is followed, and, above all, the relationship with the patient. Relatives often need to become involved in caregiving, since the nature of the disease restricts patient mobility. Furthermore, they experience social disruption, marital problems, and financial difficulties along with the patients. A study by Kouris et al,21 which included 108 patients with leg ulcers and an equal number of first-degree relatives, showed that more than 96% of family members reported a large impairment in their QoL due to their relative’s disease.
Psychosocial Impact of Chronic Leg Ulcers
Patients with leg ulcers demonstrated higher anxiety levels in comparison with healthy participants.14 This could be explained by the associated stressors of living with leg ulcers, including pain, self-esteem loss, and social isolation, with subsequent negative emotions that could potentially lead to anxiety. A study by da Silva et al22 showed that male patients especially have social implications in the areas of productivity and sexuality due to their disease, leading to restrictions in everyday life and loss in performance of socially established roles, subsequently causing anxiety for their return to full performance in these roles. In another study of 64 patients with chronic lower extremity wounds,23 42% reported anxiety. Souza Nogueira et al24 reported similar findings; 30% of the patients with chronic venous ulcers in their study presented with anxiety independent of socioeconomic variables such as religion, occupation, and marital status. A case control study by Moffatt et al25 showed that levels of anxiety were significantly greater in the patient group. This disease-related anxiety was further reinforced by required long-term therapies, cosmetic disfigurement, and social stigma.25 Another recent study7 of the psychosocial characteristics in patients with chronic leg ulcers described the psychological burden of the disease, as patients presented with higher levels of anxiety compared with healthy volunteers. Furthermore, leg ulcers reduced a patient’s ability to care for others in their family, which was significantly associated with an increased level of anxiety.
Patients with leg ulcers frequently present with depression, a result of the negative emotions that they experience and the difficulty of dealing with change in daily routines. Their skin condition makes them feel shame, embarrassment, and constant worry that their ulcer may never get better. Especially, when patients have to rest for weeks, they feel frustrated and pessimistic about ulcer healing.17,26 This feeling is even greater among men, who are usually the main income earner of the family. Moreover, Coelho et al27 demonstrated that leg ulcer patients often feel forced to abandon activities considered enjoyable while being told to implement activities potentially seen as disagreeable or unpleasant. Besides that, patients often feel disappointment, ongoing frustration, and sadness about having an ulcer. In a study by Ebbeskog and Ekman,28 leg ulcer patients often tried to hide feelings of depression and put on a cheerful face when they met friends or visited the clinic but cried when they were lonely at home. Szewczyk et al3 confirmed that patients with leg ulcers experienced depressed moods. The negative effect of the disease on patients’ social life leads to lower life satisfaction and consequently higher depression scores. In a 1995 study,8 almost half of the patients felt that other people noticed their ulcer, resulting in significantly lower life satisfaction scores.
As continual pain is a main symptom of the disease, many patients felt reminded of the ulcer and as a result, patients were unable to relax, adversely affecting their mood. They often stated they were out of control and believed they could not be helped.13 Some patients even felt their sex life had been affected as a consequence of the ulcer, leading to depression.8 Distorted body image, self-depreciation, and decreased libido were reported.8 Finally, a systematic review by Herber et al29 points out that malodor (another significant symptom of leg ulcers) was associated with lower levels of life satisfaction as well as higher depression scores.
According to Steuden and Janowski,30 negative emotions coexist with a strong feeling of loneliness in dermatological patients, including patients suffering from chronic leg ulcers. In a study of 73 patients with chronic leg ulcers, Phillips et al17 reported that 68% said ulcers had a negative emotional impact on their lives, including feelings of loneliness and social isolation. According to Lindholm
et al,31 the impact of leg ulcer disease for women, although obvious, seemed much less marked than for males, indicating that male patients should be more closely observed for symptoms of social isolation. However, in the qualitative study by Brown,32 patients with leg ulcers denied feeling lonely but described feeling socially disconnected.
A possible explanation for social isolation and loneliness could be that patients with a worse health-related QoL feel greater dissatisfaction and retire from work and daily activities. The above restrictions in work capacity and social activities hinder patients from making social contacts.33 Furthermore, patients’ feelings of shame and embarrassment regarding their body image, along with their fear of others’ reaction to their problem, leads them to withdraw from social life.34 Contact with friends and relatives narrowed to only the closest connections.8 Often, the only mean of keeping in touch was by telephone, making patients feel largely housebound. Patients also were hampered in pursuing leisurely activities (eg, swimming, gardening, and walking) as they felt that they could not show their wound in public.28 Although 70% of patients surveyed had been able to maintain their hobbies, 43% had given up some of their hobbies and experienced social isolation.8
Conclusions
Leg ulcers may not represent a high risk of death, but they are often chronic and difficult to treat. This systematic review of the literature confirms their negative impact on occupational and psychological domains, leisurely activities, and social isolation. Pain, which is the worst symptom described by patients with chronic leg ulcers, causes changes in lifestyle since patients are unable to perform normal daily activities and significantly impairs their QoL. Odor related to chronic leg ulcers is associated with negative effects on the patients’ social life as well as lower levels of life satisfaction and higher depression scores. These ulcers are associated with high financial impact due to loss of work capacity in the working-age group, work absenteeism, and medical costs. The QoL of the family is affected by the patients’ condition. In addition, patients with leg ulcers frequently present with depression, high anxiety levels, feelings of loneliness, and social isolation. Conclusively, this review aims to make practitioners aware of the aforementioned stresses that may change decision making and create awareness of why patients with leg ulcers may not be compliant and of the possible need for mental health counseling.
Acknowledgments
Affiliations: Department of Dermatology and Venereology, Andreas Sygros Skin Hospital, Athens, Greece; and 2nd Department of Psychiatry, Attikon University Hospital, Athens, Greece
Correspondence:
Eftychia Platsidaki, MD
I Dragoumi 5, 16121
Athens, Greece
platsidakieft@yahoo.com
Disclosure: The authors disclose no financial or other conflicts of interest.