Chronic Ulcers and Everyday Living: Patients’ Perspective in the United Kingdom

Our knowledge of patients’ concerns with regard to living with chronic ulceration remains incomplete. This cross-sectional survey collected the self-reported views of patients using a specifically designed questionnaire developed from issues relevant to UK patients captured through focus groups. Results were obtained for 196 patients from Wales and England with a mean age of 74.4 years (SD 12.86), and mean wound duration of 25.52 months (SD 56.95). Wound symptoms reported by patients as problematic in every day life were pain, difficulties in bathing, leakage, impaired mobility, odor, and slippage of the dressing or bandage; pain symptoms were reported as particularly distressing. In free text responses, many patients stated that nothing could be done to ease pain at dressing related procedures either on their own at home or by the healthcare professionals involved in their care. However, many patients were able to identify several factors that were important to them in reducing pain at dressing related procedures. For example, the way in which the wound was treated was important in reducing the severity of pain whilst having consistent quality of care, thorough communication, and rapport was beneficial in easing pain at dressing related procedures. Being consulted, listened to, and distracted from the procedure itself was helpful. There was a small portion of patients who volunteered that they were satisfied with their current care regardless of pain. These data highlight the importance of gaining insight into which factors and processes aid successful psychosocial adjustment and coping mechanisms associated with chronic ulceration.

Anyone who becomes ill or sustains an injury, whether present at birth or acquired later in life, experiences a change and loss in one way or another. For example, physical diseases/injuries and their treatments can dramatically change the functionality and appearance of the body, which in turn can alter psychosocial well-being.^1,2 Chronic wound healing is generally a long and uncomfortable process,³ and while many individuals adapt to the demands placed upon them and appear relatively unaffected, others experience psychosocial adjustment difficulties including adverse effects on quality of life (QoL) such as pain, negative mood, decreased activities of daily living, sleep disturbance, reduced mobility, and social withdrawal.^3–11      

Due to the chronic nature of ulceration, pain can be persistent and coping efforts typically involve individual cognitive and behavioral strategies to cope with and minimize pain and pain-related stress; many patients require extensive social support during these experiences.¹² Coping strategies tend to change depending on the nature of the illness. A person’s resources relate to the desire for information and willingness to seek advice or support¹³ and can be grouped into appraisal-focused coping (attempting to understand the illness), problem-focused coping (tackling the problem and viewing the problem as manageable), and emotion-focused coping (dealing with the feelings associated with the illness).¹⁴      

Although little research has been conducted on coping strategies used by patients with chronic ulceration, a study by Keeling et al¹⁵ looked at coping strategies used by patients with chronic leg ulcers and diabetic foot ulcers using the Coping Response Inventory. They found that patients used the entire range of strategies at close to the expected levels, but that these strategies did not change over time (4 months), which would be expected as part of an adaptation process. Consequently, taking account of coping approaches in daily life should be part of a holistic assessment approach to treatment,¹⁶ as there is a need to be aware of the patient’s views on priorities of care.      

While studies have begun to investigate the lived experience of patients with chronic ulceration, little is known about the relative impact of the range of symptoms that patients confront on a daily basis. Patients’ attitudes toward these experiences and the potential role they want healthcare professionals to play in helping them cope are unknown. A previously published study⁵ looked at issues derived from a large international, cross-sectional survey that collected the self-reported views of patients using a specifically designed questionnaire developed from issues relevant to patients captured through focus groups. The secondary analysis presented here will focus on patients’ perceptions of their experiences with symptom management in the United Kingdom.

Sample
Patients more than 18 years old with an active, chronic wound who were able and willing to participate and who had experienced discomfort/pain related to their chronic wound within the previous month were eligible for participation. Patients were asked to complete the questionnaires independently; however, the relevant nurse or physician could assist with the process by reading the questions, if necessary. The inclusion criteria were deliberately broad to ensure that a wide range of patients with these wound types were able to participate.      

Procedure
Full details of the procedure have been published⁵ and salient details have been reproduced here. After receiving ethical approval to conduct the study, each participating center identified a coordinator who agreed to take part in the survey. The coordinator’s role was to facilitate the distribution and collection of the questionnaire. The aim was to encourage nurses or physicians from a range of locations to participate in order to collect an accurate sample that was reflective of the geographical and socioeconomic factors relevant to the United Kingdom. A target sample of 200 was sought.      

Nurses or physicians were given written instructions related to the procedure, a telephone number and an email address were provided in order to answer specific questions that might arise. Nurses or physicians were encouraged to explain the procedure to the patient, allocate a questionnaire, and encourage the patient to complete and return the questionnaire during a clinic visit. In exceptional circumstances when this process was difficult, the patient was provided a stamped addressed envelope to return the questionnaire. If the patient required help with completing the questionnaire, the nurse or physician was asked to complete this task with the patient after the clinical part of the visit was completed. Each staff member was asked to ensure that the questionnaire was fully completed and that the free text, given in response to open questions, was readable. All questionnaires were returned to the lead center for collation and analysis. All data were collected between March and October 2007.   

Ethical issues
All necessary permissions were sought for this phase of the study from the relevant ethical review committees. Participation was entirely voluntary and patient care was not affected in any way by the decision to participate. Patients were not mentioned specifically by name or referred to in any way. Data were stored in locked filing cabinets and accessed only by the lead investigators and those directly involved with the data analysis.

Data analysis
Data were entered into a database (SPSS, version 16). Four researchers were involved in the input of data after receiving appropriate training. Items that required a response using a 5-point rating scale where the respondent placed a tick between two values were always rounded down, thus underestimating the scores—this accounted for < 1% of responses. Data quality checks were carried out to ensure consistency in data input and coding and included visual checks, random checks for complete patient input, systematic checks of invalid entries, and values outside the expected range. Any inconsistencies were resolved by referring to the original questionnaire. The data were summarized by wound type using frequency counts and appropriate summary statistics. All comparative analysis was performed on a descriptive or conservative basis, as this was not a hypothesis testing study. Open comments were transcribed and analyzed using content analysis by two independent researchers to ensure a high level of reliability in coding the data. Groups of multidisciplinary experts devised coding schedules that were confirmed by the two researchers involved in coding the data.

Results were obtained for 196 patients in the specified time; 123 (62.6%) of participants were female. The average age of participants was 74.4 years (min = 29, max = 101, SD = 12.86). The average wound duration across all wound types was 19.6 months (SD = 51.8) with a range from > 1 month to 65 years. Wounds of mixed etiology were not included in the sample.      

Patients were asked to rate six symptoms on a 5-point scale (1 = not a problem, 5 = a major problem [Table 1]). “Difficulties in not being able to take a bath or a shower” had the highest number of responses indicating that this was a major problem, with “pain” as the second most frequently cited major problem. However, if the symptoms are ordered by their mean scores (based on the results of participants who responded to all of the items) then “pain” has the highest mean score (3.11). The order of the symptoms in terms of being problematic was pain, difficulties in bathing, leakage, impaired mobility, odor, and slippage of the dressing or bandage.      

When asked whether there was anything the patient or those caring for them could do to relieve or reduce the level of pain at dressing change, 105 (58.7%) answered that there was “nothing that they could do” and 7 (3.9%) “did not know” (Table 2). However, 32 (17.9%) patients referred to physical handling (use of analgesics, being careful/gentle/slow, soak/moisten the dressing) as being beneficial and 3 (2.8%) said that having consistent quality of care, thorough communication, and rapport would be beneficial. Further, when asked what healthcare professionals could do to help with pain at dressing related procedures, 80 (51%) patients answered that there was “nothing” the healthcare professional could do and 3 (1.9%) “did not know” (Table 3). However, 38 (22.4%) patients referred to physical handling (use analgesics, careful/gentle/slow, soak/moisten, wash with water) and 6 (3.8%) believed that being consulted with/listened to/communicated with and distracted from the procedure would help. Eleven (7%) patients were also satisfied with their current care regardless of pain.

In the present study, wound symptoms patients reported as being problematic in daily life were pain, difficulties in bathing, leakage, impaired mobility, odor, and slippage of the dressing or bandage, which support previous findings that chronic ulceration can severely impact a person’s daily life. Herber et al¹⁷ conducted a systematic review that investigated studies describing/measuring the impact of leg ulceration on health related quality of life (HRQoL) to inform and promote self care among patients with leg ulceration. They found that compared to people without leg ulceration, patients with leg ulceration experienced significantly more pain, restricted social functioning, less energy, and limited emotional roles. Furthermore, Hareendran et al¹⁸ found that altered appearance was significantly associated with decreased QoL independent of size and duration of the ulcer in patients with leg ulcers, but found a larger effect in older people and those with pain and nonhealing ulcers. Persoon et al¹⁹ conducted a literature review that investigated the impact of leg ulcers on daily life and found that leg ulcers posed a serious threat to physical and psychological functioning, and to a lesser degree, social functioning. They found that the main problems were related to pain and immobility followed by sleep disturbance, lack of energy, work and leisure limitations, worries, frustrations, and lack of self-esteem. Fox²⁰ also found that patients’ QoL was significantly affected by their condition and that patients’ experienced altered and negative body image, social isolation, which ultimately created negative psychological impacts such as fear, frustration, anxiety, depression, and pain—this led to sleep disturbances, poorer relationships with caregivers, and loss of independence.      

The current results support previous findings that pain symptoms are particularly distressing to patients with chronic ulceration^3,5,8,21,22 and can impact a patient’s ability to cope. Many patients in the present study stated that nothing could be done to ease pain during their dressing related procedures either on their own at home or by the healthcare professionals involved in their care. Many respondents did not know what could be done either on their own or by the healthcare professional. Both of these responses require further investigation.      

Pain is intrinsic in origin and is subjective to the person experiencing it.²³ The findings presented here support the notion that pain can have a powerful effect on someone’s life if it is deemed disabling since psychological variables influence both pain and its impact.^24–26 Is it that that these individuals believe that there is “nothing” that could be done, or are they perhaps stating a loss of insight into care management in daily life or a feeling of loss of control? Furthermore, does “not knowing” relate to poor communication or lack of understanding or a feeling of helplessness?      

Several patients were able to identify factors important to them in reducing pain during dressing related procedures (eg, the way in which the wound was treated, having consistent and good quality care, communication and rapport; being consulted with, listened to, and distracted from the procedure would assist in easing the pain experienced at dressing related procedures). A small proportion volunteered that they were satisfied with their current care regardless of pain. Preliminary analysis of a follow-up qualitative study that was designed to explore some of these issues highlights that healthcare professionals play an important role in the successful care management of patients with chronic ulceration leading to successful coping. Patients who were “resigned” to their situation were less likely to adhere to treatment and believed they were more unable to cope with the effects of wound symptoms in daily life. Conversely, when patients trusted their healthcare professionals, they felt valued and appreciated. Since they felt that they were treated as a person rather than a wound, they were much more likely to tolerate the pain they experienced, were able to cope better, and were more likely to adhere to treatment (Fagervik-Morton H, Rumsey N, Price P, unpublished data, 2009).      

As these data were derived from a cross-sectional survey collecting the self-reported views of patients, there are limitations to the conclusions that can be made in relation to our understanding of the patient experience. The questionnaire excluded psychological complications and direct QoL measures—there were limited opportunities for patients to provide open comments or raise additional issues not already included in the questionnaire. The cross-sectional design does not allow follow-up over time to investigate the adaptive coping process that patients may be using. Additionally, the sample included a range of wound types; hence, specific issues related to etiology were not explored. Consequently, in some cases we can only infer whether psychosocial issues are directly related to wound symptom management and/or whether these issues affect psychosocial well being. As the etiology and comorbidities associated with chronic wounds can complicate the assessment of the quantity and quality of the pain perceived by the patient,²⁷ identifying which factors and processes aid successful coping could be highly relevant and of great interest for future research given that psychological factors are important modifiers of pain perception.²⁸ Gaining insight into these processes will enable healthcare professionals to adapt their approach to better meet patients’ holistic management needs and aid improved coping in patients with chronic ulceration.

Overall, the results obtained for 196 patients with chronic ulceration suggest individuals experience a range of problems related to living with their chronic condition that could negatively impact their QoL. Thorough assessment of each patient is critical when establishing a comprehensive care plan. Unresolved issues and pain can negatively impact adherence, wound healing, and psychosocial adjustment since a person’s perception of their medical condition, experience and beliefs about their pain, and in turn their coping strategies with ulceration are influenced by biopsychosocial interactions and factors.²⁹      

Consequently, focusing on the relative importance of symptoms is fundamental for prioritizing care pathways. Furthermore, it is critical to be aware of the patient’s views regarding priorities of care, as his or her voice can be added to the role of the professionals who are contributing to care leading to enhanced adherence and thus, faster or better healing.

Data were collected from 4 regions of the United Kingdom. The authors would like to acknowledge the work of the center coordinators (N Ivins, J Stephen-Haynes, K Vowden, T Young) and their teams. The original study was supported by an unconditional educational grant from Mölnlycke Health Care; however, the company had no further role in the study.     

The authors particularly wish to thank the patients who participated in the study and so willingly gave their time and shared their experiences.

Address correspondence to: Patricia Price, BA(Hons), PhD, AFBPsS, CH Psychol Department of Wound Healing, School of Medicine Cardiff University Heath Park, Cardiff, UK CF14 4XN
Email: pricepe@Cardiff.ac.uk