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Part 2: Symptom self-assessment in the management of fungating wounds

Author(s)

Wayne Naylor
BSc(Hons), RN, Dip Nursing, Onc cert
Wound Management Research Nurse
Directorate of Nursing, Rehabilitation and Quality Assurance
Royal Marsden Hospital, Sutton, Surrey, SM2 5PT, UK
Email: Wayne.Naylor@rmh.nthames.nhs.uk

Contents
Published: July 2002
Last updated: Feb 2002
Revision: 1.0

Keywords: fungating wounds; symptom self-assessment; palliative care; patient-centred care plan; assessment tool.

Key Points

  1. Accurate assessment of symptoms is vital to provide correct treatment, evaluate effectiveness of interventions and gain an insight into patients' quality of life.

  2. Assessment of fungating wounds should establish a patient's psychological and social state as well as local wound factors.

  3. Patient ratings are generally considered the 'gold standard' for symptom reporting; self-reporting can be problematic for the very ill patient with advanced cancer.

  4. The WoSSAC has been designed to measure the severity of symptoms and problems associated with fungating wounds, as well as the impact they have on the patient's life. The results of the assessment may be used to develop a patient centred care plan.

Abstract

Fungating wounds are a significant problem for both patients and healthcare professionals. Not only do they signify progressive and life threatening disease, but they also significantly affect patients' quality of life by causing unpleasant and difficult to manage symptoms (see Part 1). Symptom control and appropriate psychosocial support are the main treatment goals aimed at improving quality of life. Accurate assessment is the cornerstone of effective symptom management and self-reporting by the patient may be considered to be the most appropriate method.

In Part 2 the development of a new symptom self-assessment tool, the Wound Symptoms Self-Assessment Chart (WoSSAC), is described. This tool allows patients to rate the severity of symptoms and problems they are experiencing, together with the level of interference they have on their daily lives. A pilot study is currently being conducted to assess the content validity of the WoSSAC.


Introduction

The assessment of fungating wounds is an extremely important aspect of care. It should involve a holistic approach and include information on the patient's psychological and social state as well as local wound factors [1], [2], [3]. Collier [2] suggests that this may be achieved using a nursing model and recommends Roper, Logan and Tierney's 'Activities of Daily Living'.

The literature on fungating wounds indicates that the management of symptoms should be patient-focused. Grocott [4] suggests that management should be guided by problems identified by the patient, combined with the clinical concerns of health professionals. Other authors support this view, stating that symptom management priorities should be based on those problems identified by the patient as being the most troublesome [3], [5], [6], while Price considers the main aim of management to be an improvement in a patient's quality of life (QoL) [7].

Using a structured framework

It is vital that a consistent and reliable method of symptom assessment is used, as the information gained may be used to monitor the efficacy of treatment, side effects of treatment or to provide an insight into the patient's QoL [8]. This type of evaluation is of particular importance for the patient in the palliative care setting where curing disease is no longer possible and improving or maintaining QoL is the goal [9], [10], [11]. In order to reliably identify and rate symptoms it is useful to have a structured framework of assessment. Sarna [12], in a study involving patients with lung cancer, found that the use of a structured nursing assessment to evaluate symptom distress forestalled an increase in symptom distress over time. In this study, patients were given three self-report scales and one objective assessment. This type of structured assessment may produce better symptom relief by providing the necessary information for informed and personalised interventions [12].

The literature on chronic wound assessment offers some useful guidance which can be applied to the assessment of fungating wounds:

Conceptual model of fungating wounds

Figure 1 provides a conceptual model illustrating the potential impact of a malignant fungating wound on a patient's quality of life. The model is based on a framework proposed by Ware [25], and explores the interrelationships between wound symptoms/problems and their effect on different aspects of health and functioning. This framework moves beyond the immediate impact of disease to explore its effect on the patient's wider psychosocial environment [26]. Central to the model is the disease itself, with the initial impact on the patient's physiology. Therefore the central area of the model shows the wound-related symptoms and the interactions between these different symptoms. The effect then spreads outwards in concentric circles to physical functioning, psychological functioning, general health perception and social and role functioning. The objective of developing this model was to identify and visualise the relationships between the different aspects of fungating wounds and how these impact on other areas of health. The literature suggests that the psychosocial problems experienced by patients with fungating wounds are directly related to their symptoms and this model supports these findings. This conceptual model highlights the far-reaching consequences of living with a fungating wound and forms the basis of the patient assessment tool described below.


image
Figure 1 - Conceptual model of malignant fungating wounds

Development of a self-assessment chart for wound symptoms

Following a literature review, a list of properties considered essential for an assessment tool for fungating wounds was developed (Table 1). These are based on the criteria proposed by Flanagan [14] for selecting an assessment instrument.
Table 1: Blueprint for tool used to assess symptoms and psychosocial problems related to fungating wounds
The tool must:
Be easily understood by the healthcare professionals who may use it
Be easily understood and completed by the patient
Incorporate potential symptoms and problems that may be encountered by patients with a fungating wound
Be able to identify the symptoms and problems of most concern to the patient in relation to their wound
Provide a measure of the effect of symptoms and problems on the patient's QoL
Provide accurate assessment information that will guide management of the patient's wound
Be sensitive enough to measure change in symptoms
Be reliable and valid for use with patients who have fungating wounds

Patient ratings are generally considered the 'gold standard' for symptom reporting [9]. However, for the very ill patient with advanced cancer, self-reporting can be a problem, especially if the patient has any cognitive impairment or communication difficulties, when self-reporting may become unrealistic [10], [27]. Difficulty may also occur if the patient is experiencing severe symptom distress or completing the tool is too physically or emotionally demanding [27]. However, it is at this point, when the patient is most unwell, that accurate assessment is so important [28]. Therefore self-assessment tools need to be brief, reliable and easily administered.

For this self-assessment tool a questionnaire format was chosen, as it provides a structured method of obtaining factual information and has a high degree of consistency for descriptive or comparative data [29]. This type of information is necessary for the development of an individualised management plan, as well as the ongoing evaluation of symptom and problem management strategies. Because questionnaires are standardised and structured they can provide reliable assessments over time and between patients [30].

A six-stage process for developing a questionnaire was adopted to establish the content and format of the assessment tool. This included item selection, item reduction, questionnaire format, pre-testing, reliability, and validity [31]. The new tool's working title is the Wound Symptoms Self-Assessment Chart or WoSSAC.

Item selection

Items were selected that could potentially be incorporated into the tool. This included all the symptoms and problems identified from the literature on fungating wounds (Table 2) [1], [2], [3], [4], [6], [7], [32], [33], [34], [35], [36], [37], [38], [39], [40], [41], [42], [43], [44] .
Table 2: Potential items for inclusion in the WoSSAC
Wound Psychosocial
Bleeding Body image
Colour/condition of the wound bed Communication difficulties
Comfort of dressings Cosmetic effect of dressing
Devitalised tissue Denial
Exudate Depression
Frequency of dressing changes Embarrassment
Infection Fear
Location Guilt
Odour Impact on family
Pain Information needs
Pain related to dressing changes Restrictions due to dressing changes
Pruritis Revulsion/disgust
Size/shape Self-respect/self-esteem
Surrounding skin Sexuality
Tunnelling/undermining Shame
Social isolation
Social support/resources

Item reduction

The large number of items identified needed to be reduced to allow for easy and quick self-assessment. Some items were felt not to be appropriate, as patients would not be able to assess them easily or appropriately (e.g. physical aspects of the wound). At present a pilot study is being conducted with the aim of further reducing the number of items and evaluating content validity based on patient feedback. The items currently under review for inclusion in the WoSSAC include:

  1. Pain from the wound

  2. Pain related to dressing changes

  3. Fluid (exudate) leakage from dressing

  4. Bleeding from the wound

  5. Smell (odour) from wound

  6. Itching (pruritis) of the wound or surrounding skin

  7. Comfort of dressing

  8. Effect of dressings on looks (cosmetic effect of dressing)

  9. Effect of wound on appearance (body image)

  10. Effect of wound on mood (depression)

  11. Effect of wound on feelings about self (self-esteem)

  12. Effect of wound on social interaction (social isolation)

  13. Restrictions due to dressing changes

  14. Amount of social support

  15. Information about wound

  16. Feeling embarrassed about wound

  17. Feeling ashamed about wound

  18. Feeling guilty about wound

  19. Effect of wound on relationship with partner

  20. Effect of wound on family

  21. Effect of wound on desire to go out

Questionnaire format

A self-report questionnaire must be easily read and understood by patients who, in some cases, may have advanced or terminal illness and it is important that the layout, wording and length is appropriate to this patient group. As this tool is intended to measure symptom distress, it was decided to evaluate both severity and interference with daily life of each symptom or problem. Patients are asked to rate both parameters for the previous seven days. Each item consists of two parts: a lead-in question (or stem) and a response set [45].

A visual analogue scale (VAS) was chosen for the response set to questions on severity (Figure 2). The VAS has been used to measure mood, anxiety, alertness, attitudes, functional abilities and severity of clinical symptoms, in particular pain [29] [45], [46]. A number of studies have evaluated various presentations of the VAS, such as longer lines, vertical presentation, dividing the line into segments and adding descriptors at various points along the line. The 100 millimetre, horizontal presentation where the patient is asked to place a mark on the line at the point that best describes their symptom appears to be the most effective [46].

For questions on the level of interference, a five-point Likert-type scale was used (Figure 2). This consists of a five-point numerical scale with declarative statements at each of the points. This type of scale is commonly used to determine opinion or attitude. Patients are asked to choose a number that best describes their current opinion [29]. This is an ordinal scale and there is no equal distance implied between each of the statements. They are, however, ranked in a hierarchical order to suggest that 'A little bit' is worse than 'Not at all' but better than 'Somewhat', and so on (see Appendix A).


image
Figure 2 - Example of question layout in the WoSSAC

The WoSSAC is intended to be used for multiple assessments over time. It will therefore need to incorporate an ongoing record of assessments to enable evaluation of any interventions. A 'Symptom Evaluation Grid' was developed, modelled on the Symptom Assessment Graph from the Edmonton Symptom Assessment System [47]. The Symptom Evaluation Grid records the severity and interference scores for each item for several assessments over a period of time. The severity is calculated by counting the divisions on the VAS and recording this number, to the nearest division, from the left-hand side ('best' side) to the patient's mark. This measurement is then transferred, as a score out of ten, to the grid. This part of the grid has a column that is divided into ten segments with one segment corresponding to one division on the VAS. Segments are coloured in according to the score, producing a visual graph of a patient's progress towards symptom/problem management goals. Underneath the column is a space to record the level of interference, which is simply the numerical score from the Likert scale (see see Appendix B).

Pre-testing

Pre-testing or piloting of the tool is currently underway. Ten patients will be asked to examine each item and decide whether it applies to them or not and how easy each question is to understand. Patients will also be asked whether they feel any items are inappropriate. It is hoped that this method of content analysis will introduce the patient's view of what needs to be included in the chart. It is also planned to ask an expert panel to rate the content of the WoSSAC as part of the content validation process. The information gained from this part of the study will be used to evaluate content validity, or comprehensiveness, of the WoSSAC.

Reliability and validity

The final stages of the WoSSAC development will take place during a clinical study. Reliability relates to an instrument's ability to produce consistent results across patients, time or observers and validity is described as 'the extent to which a test measures what it is supposed to measure' [29], [45], [46]. Since the WoSSAC has a questionnaire format with a fixed structure and content it can be assumed to be reliable, and as a self-report tool, the reliability of the observer, or rater, will be consistent. However, problems may occur if the patient is too ill to complete the questionnaire and an alternative assessor, such as the patient's relative, has to complete it. The WoSSAC is primarily designed for individual patient assessments and to inform healthcare professionals about patients' immediate concerns. It is not designed for research purposes or to produce data for comparison between patients, therefore it could be argued that reliability across patients might not be essential [11]. However, with the current paucity of original research into the management of fungating wounds, the WoSSAC may provide a means of monitoring care over time and could be used to evaluate the efficacy of different treatment strategies.

Conclusion

At present, there is no valid and reliable method of self-assessment to assist in the evaluation of symptoms and problems related specifically to fungating wounds. One tool that has been utilised in the research setting for assessment by healtcare professionals is the TELER system of note-making [48], [49]. The TELER system comprises indicators, which track progress towards or away from a specific treatment goal [50]. It has been suggested that this system of note-making allows clinicians to view, 'at a glance', trends in patient problems and how they are related to the treatment or care given [51]. The TELER system does not lend itself to self-assessment by the patient and relies on clinicians to record information. This may introduce bias. The TELER system is available for a fee, which includes training and ongoing support.

The WoSSAC has been designed to measure the severity of symptoms and problems associated with fungating wounds, as well as the impact they have on the patient's life, from the patient's perspective. The results of this assessment can be used to develop a patient-centred care plan. The Symptom Evaluation Grid will allow for monitoring and comparison of patient symptoms and problems over time, as well as an assessment of the effectiveness of symptom management strategies. It is intended that the WoSSAC be used for any patient who has a fungating wound, whether they are in an advanced stage of their illness or have localised disease. The current pilot study of the WoSSAC will provide valuable data on its content validity, as well as the appropriateness and effectiveness of the questionnaire design. It will also supply useful information for the future development and implementation of this type of symptom assessment.

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Appendix A: Examples of questions and layout from the WoSSAC

These questions are available as a PDF or Microsoft Word file.

Appendix B: Sample of the Symptom Evaluation Grid

The WoSSAC symptom evaluation grid is available as a PDF or Microsoft Word file.


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