An exploration of patients understanding of leg ulceration Objective: This study aimed to identify patients understanding of leg ulceration by examining their knowledge of the disease process and their expectations of their treatment outcomes. It also aimed to identify their attitudes to any patient information provided to them. Method: A total of 101 patients (median age: 75 years, range: 23 91; 54% female) with current leg ulceration of 16 months median duration (range: 1 480) were asked about their understanding of their condition and treatment and their expectations of patient information provided by health-care professionals. Results: The majority of patients believed they knew the cause of their ulceration (66%), most frequently attributing it to trauma (28%). The most important part of the treatment was felt to be bandaging (27%) and visiting the clinic (12%).Thirty-nine percent did not know what the term venous meant. Trauma was frequently described as a psychological problem, with only 7% associating the word with a knock or wound. Over half of the patients (64%) expressed an interest in acquiring further information, particularly on how they could assist ulcer healing (51%). Conclusion: For patient education to be effective, it must be tailored to the patients vocabulary using simple concepts and straightforward, unambiguous messages. Declaration of interest: None. chronic leg ulceration; compression bandaging; information leaflets The provision of patient education is an integral part of clinical practice: it increases patients knowledge, contributes to behavioural change and helps patients make informed decisions about their care. 1 The King s Fund has stated that providing information and advice should be a key component of service provision in the UK. 2 However, the Audit Commission found that patients do not receive sufficient information about their care, 3 which could have a detrimental effect on outcomes. It has been suggested that the incidence of nonadherence is higher in patients requiring complex, long-term treatment. 4 Provision of adequate information with clear, unambiguous and, where possible, written advice encourages adherence. 5 However, more than just education alone may be required to promote adherence with medical regimens. Greenfield et al., 6 for example, suggested that patients should be more active in the decisionmaking process. Conversely, there is a risk that increased information provision may reduce adherence due to greater awareness of potential adverse effects or reactions. 7 There is very little empirical research evidence on the effectiveness of educational interventions for patients with leg ulcers. These patients are often regarded as having a passive attitude to patient education for example, not requesting more information or failing to question the practitioner. 8 Nudds 9 investigated whether leg-ulcer healing rates improved following provision of detailed patient information. The findings indicated that patients who understood the pathophysiology of leg ulceration were more committed to wearing compression hosiery or bandaging than those who did not have this understanding. This suggests that patient education could have a role to play in promoting patient adherence. Many patients with leg ulcers may experience protracted periods of ulceration, which often require complex treatment regimens. 10 Unless the underlying cause of venous dysfunction is corrected through surgical intervention, patients with venous leg ulcers will need to wear compression bandaging or hosiery for the rest of their lives. 11 Adherence to such a medical regimen requires sustained behavioural change to prevent a recur- L.M. Edwards,MSc,RN, NDN, Cert Ed, Senior Lecturer; C.J. Moffatt, MA, RN, DN, Professor of Nursing and Co-director; P.J. Franks, BSc, MSc, PhD, Co-director; All at Centre for Research and Implementation of Clinical Practice, School of Research and Postgraduate Studies, Thames Valley University, Wolfson Institute of Health Sciences, London, UK. Email: Lynfa. Edwards@tvu.ac.uk JOURNAL OF WOUND CARE VOL 11, NO 1, JANUARY 2002 35
Fig 1. Knowledge about cause of ulcer 35 Fig 2. Most important part of treatment 20 30 25 20 15 10 5 15 10 5 0 1 1 1 1 1 1 don t know visit clinic dressing keep clean nursing treatment 0 1 1 1 1 1 1 trauma poor circulation veins thrombosis varicose vasculitis Fig 4. Information received and its value to patients 1 1 1 1 1 1 1 1 oral written Type of information very don t know Fig 3.What the patient could do to help heal their ulcer 1 1 1 1 1 1 1 1 don t know legs go to clinic rest elevate quite walk not very eat well it told me nothing keep not Response to information bandage interested don t knock read unable to rence. Patient education initiatives can help patients to make the required lifestyle and behavioural changes. A range of patient education tools 12,13 have been produced for patients with leg ulcers, but little is known of their relevance to treatments and their effectiveness in altering behaviour. This study aimed to identify patients understanding of leg ulceration by examining their knowledge and expectations of their treatment outcomes. It also sought to identify their attitudes to information provided by health-care professionals. Method The study population comprised patients with leg ulcers cared for by community nurses in two neighbouring community NHS trusts in west London. Patients who required hospital and nursing-home care were excluded from the study, as were those with dementia or who could not speak English. The aetiology of the ulcers was defined on the basis of the community nurses patient assessments. A questionnaire designed to gain information about the patients understanding of their condition and treatment, and their expectations of the information provided by health-care professionals, was developed. It aimed to explore general themes relating to these perceptions. These included the: Cause of the ulcer and treatments used Information patients received from health-care professionals about their leg ulcer care Information the patient would like to receive. Finally, patients were asked to explain words and phrases commonly used by practitioners in relation to their leg ulcer care. Ethical approval was gained from both local research ethics committees. The researchers then generated an opportunistic sample of patients treated by community nurses, either at home or in community leg ulcer clinics. The patients received a leaflet explaining the study s aims. All gave informed consent. The researchers then informed the participants GPs. 36 JOURNAL OF WOUND CARE VOL 11, NO 1, JANUARY 2002
Table 1. Demographic details and leg ulcer history research Median age: 75 years (range: 23 91) Sex Female 54% Male 46% Aetiology Venous 76% Arterial 9% Other 15% Ulcer details Unilateral 81% Bilateral 19% Duration: 16 months (range 1 480) As the patients had varying visual and cognitive abilities, they were interviewed using a structured questionnaire. Examples of questions were: Have you ever been given written information about your ulcer from a doctor or nurse? and What is likely to influence you to read a patient information booklet? The interviews took place in the patient s home or in the community leg ulcer clinic. A pilot study, involving five patients who did not take part in the main study, was also undertaken. Results A total of 101 patients with chronic and recurrent leg ulceration participated in the study (median age: 75 years; range: 23 91). Of these, 46% were male and 54% female. The patients demographic details and leg ulcer history are given in Table 1. Fig 5. Main factors perceived by the patients that help prevent leg ulcer healing 8 7 1 1 1 1 1 1 1 1 1 1 veins obesity varicose lack of exercise a lot standing high blood pressure smoking Fig 6.Type of information required 7 stress drinking alcohol high blood cholesterol keeping leg raised Knowledge of the cause of the ulceration Of the patients, 28% believed that trauma was the main cause of their leg ulceration. A quarter (24%) attributed it to circulatory problems, including poor general circulation (11%), varicose veins (8%), thrombosis (2%) and vasculitis (2%). One-third (34%) did not know the cause (Fig 1). Most important part of treatment Forty percent did not have an opinion about the importance of each part of the treatment process and a further 19% did not know the most important part of their treatment. Of those who stated an opinion, visiting the leg ulcer clinic (12%) and dressings (8%) were considered important. Only 5% considered nursing input most important (Fig 2). 1 1 1 1 1 1 1 1 1 1 1 1 want advice assistance with ulcer healing cause of ulcer who to contact for help pain relief prevention of occurrence dressings used bandages used exercise advice dietary advice how clinics run other related health problems How patients could assist healing Over half of the patients (51%) did not know what they personally could do to heal their ulcer. There was a mixed message, as perceived by patients, as to whether they should rest more (7%) or be more active (7%) (Fig 3). Information received and its value to patients Only 60% claimed to have received any patient information (written and/or oral) on leg ulceration and its treatment. A fifth of these patients stated it was provided in a written format. However, when information was received, it was perceived as either very or quite. Only 2% were unable to read the information given to them but no evidence was collected on the reason for this (Fig 4). Factors that prevent healing The patients generally had a good understanding of why their venous leg ulcers would not heal, citing varicose veins, obesity, lack of exercise and standing for long periods. More than half stated that high blood pressure, smoking, stress and high blood cholesterol were important in delaying healing (Fig 5). JOURNAL OF WOUND CARE VOL 11, NO 1, JANUARY 2002 37
Table 2. Patients understanding of medical terminology References 1 Coates,V.E. Education for Patients and Clients. London: Routledge, 1999. 2 King s Fund. Consensus statement: the treatment of stroke. BMJ 1988; 297: 126-128. 3 Audit Commission.What Seems to be the Matter: Communication between hospitals and patients. London: HMSO, 1993. 4 Becker, M., Maiman, L. Sociobehavioral determinants of compliance with health and medical care regimes. Medical Care 1975; 13: 10-24. 5 Cameron, C. Patient compliance: recognition of factors involved and suggestions for promoting compliance with therapeutic regimes. J Adv Nursing 1996; 24: 2, 244-250. 6 Greenfield, S., Kaplan, S., Ware, J.E. Expanding patient involvement in care: effective patient outcomes. Annals Internal Med 1985; 102: 4, 520-528. 7 Knapp, P., Raynor D.K., Forster,A., Henley, J. Written Information about Medicines for Consumers. In: Cochrane The Cochrane Library, issue 2. Oxford: Update Software, 2000. 8 Hamer, C., Cullum, N.A., Roe, B.H. Patient perceptions of chromic ulceration. In: Harding, K.G., Cherry, G., Dealey, C., Turner,T.D. (eds). Proceedings of the 2nd European Conference in Wound Care. Macmillan: London, 1992. 9 Nudds, L. Healing information: leg ulcers. Community Outlook 1987; 83: 12-14. Information patients would like to receive A high proportion (64%) wanted further advice, mostly on how they could help heal their ulcer, what caused the ulcer, pain relief, how to prevent a recurrence and who to contact for help if the ulcer deteriorated (Fig 6). Understanding medical terminology Forty percent did not know the meaning of the word venous ; 28% associated the term with veins and only 10% linked it with a type of ulcer. It was also attributed to a star and the goddess of love. The term trauma was associated with psychological problems rather than physical damage. For example, 46% thought that trauma is caused by shock and stress, or by a hurtful experience, affliction and pain. Only 7% attributed it to a knock, even though the term was used in the context of their leg ulceration (Table 2). Discussion Although guidelines from both trusts state that patients should receive information leaflets, 40% of the patients claimed not to have received one. It was not possible to check the accuracy of these claims some patients could have received information and then forgotten about it. One way of dealing with this would be to audit information provision as part of a clinical-effectiveness exercise. We live in a multicultural society in which anyone with an illness or disease has a right to information about it. However, people are often denied access to information because of language barriers. Indeed, some patients were excluded from this study because they did not speak or read English. A previous study found that 20% of patients could not remember or did not know the cause of their leg ulceration. 8 In the present study, 34% were unable to state the cause of their ulceration. A quarter thought it was associated with circulatory problems and 28% with trauma, which included sitting by the fire and an insect bite. There appears to be insufficient knowledge about patients understanding of how they can assist leg ulcer healing. There were mixed messages about rest and exercise: a small proportion of patients stated that physical activity (7%) would help or, conversely, that rest is important (7%). It could not be ascertained from the answers whether this confusion was caused by incorrect patient information or simply reflected the patients lack of understanding. This is a limitation of the study. Dressings were considered an important part of treatment, despite evidence that they do not reduce healing times. 14 However, their use can help to control odour and excessive exudate. It was not clear whether patients included compression bandages as part of their dressing regimen. The following terms are often used to describe aspects of leg ulceration. Patients were asked to describe them in relation to their own leg ulcer Vein Blood tube Blood flow to the heart Doesn t do anything Supplies artery with blood Should have them Blood from heart Venous To do with veins Type of ulcer Star Goddess of love Incompetent veins Not working Vein blocked Caused by heat Not flowing Trauma Shock/stress Knock Hurtful experience Affliction Great pain Keeping the ulcer dry and clean was thought to be beneficial, although, again, there is no evidence to support this in the literature. It is not clear where the patients perception of this came from or if the message originated from the nurses. Only one-fifth of patients claimed to have received written information, even though patient education leaflets are available in leg ulcer clinics and other community settings. When written information was given, 2% were unable to read it, although no data were collected on the reasons for this. Even if patients have 38 JOURNAL OF WOUND CARE VOL 11, NO 1, JANUARY 2002
adequate reading skills, understanding and interpretation cannot be guaranteed. Hussey and Gilliard 15 stated that: Poor reading skills affect understanding and interpretation of meaning, organisation of thought, perception and vocabulary development can cause misunderstanding, and as a result instructions are misinterpreted. Patients were asked to write down the meanings of phrases that may not be considered suitable for use in an information leaflet. Examples of these include compression bandages, incompetent veins and sedentary lifestyles. However, it is well known that patients and nurses often use such phrases during clinical procedures. Patients identified varicose veins, obesity, lack of exercise and standing for long periods as key factors that prevent healing. Many understood that their condition was related to a circulatory problem and that poor circulation can prevent healing, but were not aware of the difference between arterial and venous disease. More than half considered high blood pressure, smoking, stress and high blood cholesterol important factors in preventing leg ulcer healing, even though there is no evidence to support this in the literature. Patients and health professionals appeared to have different interpretations of health-related problems. Such differences in perception can influence leg ulcer management. Therefore, practitioners should seek to understand patients beliefs and attitudes before engaging them in discussion about a treatment regimen. This, in turn, should help patients to become active participants in care. It has been suggested that active patients ask questions, seek explanations, state preferences, offer opinions and expect to be heard 16 part of the process of patient empowerment. If practitioners and patients are to work together as partners, there must be equal power in the relationship. However, it has been suggested that Box 1. Implications for practice Patient education is required throughout the treatment period and following ulcer healing All patients with leg ulceration should be given information about their condition and treatment The information given should be written in a language that the patient understands Health professionals should ensure that the patient understands the terminology used in patient education material Health professionals should identify their patients knowledge base to ascertain whether they have a clear understanding of their condition and treatment Box 2. Summary of the main findings There is little empirical research evidence on the effectiveness of educational interventions for patients with leg ulcers.this study aimed to identify patient s understanding of leg ulceration by examining their knowledge of the condition and what they expected their clinical outcomes to be. It also investigated their perceptions of patient information The sample comprised 101 patients with chronic and recurrent leg ulceration Of these patients, 40% claimed they did not receive patient information on leg ulceration. One-third were unaware of the cause of their ulceration and over half did not know how they could help heal the ulcer. Forty percent did not have an opinion about the importance of each part of the treatment process and a further 19% could not define what they believed to be the most important aspect of treatment Twenty-eight percent believed that trauma was the main cause of their ulceration, with a quarter attributing it to circulatory problems. However, 40% did not know the meaning of the term venous, while similarly there was much confusion about the term trauma The study findings indicate that patients with chronic leg ulcers want more information on the condition and its treatment.this must be written in simple, clear and jargon-free language if it is to be effective nurses exert power over patients through the use of language, 17 which can have detrimental effects on patient outcomes. Patients often appear to be passive in their use of information, both written and spoken. Clinicians should not assume that the patient understands the information given, particularly if they have not asked any questions, and must ensure that they have interpreted it correctly. Providing patient information is more than just giving advice or handing out a leaflet. The practitioner must aim to ensure that the information is delivered in such a way that it can influence attitudes and behaviour. Conclusion This study highlights that patients would like to receive more information about leg ulceration. Specific topics include: How patients can assist healing The cause of ulceration How best to control pain How to prevent a recurrence. These areas should be covered in educational material and be tailored to the patients vocabulary, using simple, jargon-free concepts and straightforward unambiguous messages. The information should be reinforced using terms that patients will be able to understand. Only when patients gain a clear understanding about their condition are they able to make informed decisions and become active participants in their care. research 10 Callum, M.J., Ruckley, C.V., Harper, D.R., Dale, J.J. Chronic ulceration of the leg: extent of the problem and provision of care. BMJ 1985; 290: 1855-1856. 11 Edwards, L.M.A guide to compression bandaging: treating venous leg ulcers. J Comm Nurs 1998; 12: 12, 4-14. 12 Edwards, L.M., Moffatt, C.J. Understanding your Leg Ulcer:A simple guide for patients. Hull: Smith and Nephew, 1998. 13 Green, S., Macmillan- Day, M., O Hare,L.A Patient s Guide to Venous Leg Ulcers. Loughborough: 3M Health Care, 1995. 14 Blair, S.D., Backhouse, C.M.,Wright, D.D.I. et al. Do dressings influence the healing of chronic venous ulcers? Phlebology 1988; 3: 129-134. 15 Hussey L.C., Gilliland, K. Compliance, low literacy and locus of control. Nursing Clinics N Am 1989; 24: 3, 605-611. 16 Steele, J.D., Blackwell, B., Gutman, M.C., Jackson, J.C. The activated patient: dogma or desideratum? Patient Ed Counselling 1987; 10: 3-23. 17 Hewison,A. Nurses power in interactions with patients. J Adv Nursing 1995; 21:75-82. Acknowledgement The authors would like to thank the community nurses and patients of Riverside and West London Community NHS Trusts for their co-operation in this study JOURNAL OF WOUND CARE VOL 11, NO 1, JANUARY 2002 39