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In depth

Evaluating tools that can be used to measure and manage breathlessness in chronic disease

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Questionnaires help nurses to complete a thorough assessment but they need to be carefully selected to ensure they are appropriate to specific patient groups

Authors

Janelle Yorke, PhD, MRes, PGCE, RGN is lecturer/researcher; Cath Savin, MA, HV, RGN, is lecturer; both at School of Nursing & Midwifery, University of Salford, Manchester.

Abstract

Yorke J, Savin C (2010) Evaluating tools that can be used to measure and manage breathlessness in chronic disease. Nursing Times; 106: 17, early online publication.

Questionnaires used to assess breathlessness are usually research tools, which means data on their value in assessing patients’ symptoms in clinical practice is minimal. This article examines the questionnaires currently available and discusses their strengths and weaknesses to help nurses make informed choices about which breathlessness questionnaire is most suited to their practice.

 Keywords Measurement, Breathlessness, Assessment

  • This article has been double blind peer reviewed

 

 

Practice points

  • Breathlessness is multidimensional and affects every aspect of life.
  • Questionnaires have been designed to capture the effect of this symptom on daily function.
  • Since most were developed using people with COPD, their use with other patient groups needs careful consideration.
  • Many questionnaires explore the effect of breathlessness on activity but exclude people who avoid activities due to fear of the symptom.
  • Those that appear to be most clinically useful are single item tools and the Dyspnoea-12.

 

Breathlessness is a subjective experience and nurses are actively involved in its assessment and non-pharmacological management. Clinical assessment of this symptom includes history taking, assessing vital signs and breath sounds. Using a validated questionnaire may help nurses to complete a thorough assessment.

The American Thoracic Society (1999) defined breathlessness as “a subjective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity. The experience is derived from interaction among multiple physiological, psychological, social and environmental factors and may induce secondary physiological and behavioural responses”. This definition provides a comprehensive overview of the physiological mechanisms involved in patients’ perception of breathlessness and emotional reactions to it. Assessment should include all these factors. The causes of breathlessness are listed in box 1.

Clinical measurement of breathlessness

Clinical measurement using a questionnaire can help nurses to achieve a number of goals. It can provide them with baseline information about how individuals perceive their illness. The information in a questionnaire also provides a benchmark to assess patients’ perception of whether their condition is improving or deteriorating. Documenting this in the case notes provides sources of information for other nurses and the multiprofessional team.

Breathlessness questionnaires can be completed in hospital during an acute illness and can also be used to assess patients at home. In the latter, nurses can use a questionnaire alongside observation to assess how people function in their own environment. They can then compare patients’ subjective views with their observations. This supports a holistic approach to care delivery, whereby patients’ social circumstances can be assessed and appropriate referrals made to the multiprofessional team to support them at home (Department of Health, 2008).

Using breathlessness questionnaires

Breathlessness is a subjective experience, and as such its assessment is complex and must rely on patients self reporting (Yorke, 2008). Because of these complexities the development of breathlessness questionnaires can take several years and should involve an experienced multiprofessional team.

Nurses need to consider a number of key issues  when choosing a questionnaire to assess breathlessness:

  • What patient population was used to develop the questionnaire? Most breathlessness questionnaires have been developed using people with chronic obstructive pulmonary disease (COPD). It is important to ensure that the items in a questionnaire relate to the experience of this symptom in other groups;
  • What aspect of breathlessness does the questionnaire explore? The symptom is a multidimensional experience and it affects many aspects of patients’ lives. It causes distress and anxiety, limits activity and independence, and has a negative impact on quality of life. There is currently no questionnaire incorporating all these; it may be necessary to use more than one to collect all the relevant information or decide on which aspect is most pertinent to patients and their care regime;
  • Does the questionnaire measure breathlessness in response to activities? Breathless people are often unable to perform daily activities. Many questionnaires reflect this and measure breathlessness in relation to tasks that cause it. This is an important criterion to consider if in cases where a questionnaire is used to assess the symptom in hospital and information is then transferred to the community where the type and level of activity is likely to be different. In these circumstances it may be necessary to reset patients’ baseline.
  • How is the questionnaire administered? Most are developed so patients can complete them independently, although sometimes they may need help with this. If this is the case, nurses must read the questionnaire to patients exactly as it is written. This approach also enables questionnaires to be completed over the telephone.

For a questionnaire to be useful in clinical practice it needs to be quick and easy to apply and able to detect changes in an individual patient. In order for nurses to be able to evaluate the potential usefulness of a questionnaire, they need to be familiar with the concepts of validity and reliability, which are described in Box 2.

A number of questionnaires report patients’ experience of breathlessness and those commonly used are outlined below.

Single item scales

The visual analogue scale (VAS) (Gift, 1989) and the Borg scale (Borg, 1982) contain only one item and patients respond on a scale, normally 0 (no breathlessness) to 10 (maximal breathlessness). They can be adapted to measure different aspects of the symptom, such as “bother caused by breathlessness”, “distress due to breathlessness” and “uncomfortable breathing”. The Borg scale also consists of descriptors anchored to specific numbers on the scale. For example, 2 is anchored by the description “slight” and 7 by “very severe”. The presence of these anchors is thought to improve the questionnaire’s reliability.

Single item questionnaires may be clinically useful because they are simple and quick to use and do not require a complicated scoring system. They are useful to determine the immediate effect of an intervention for managing breathlessness.

Medical Research Council Dyspnoea Scale

The MRC Dyspnoea Scale (Fletcher, 1960) is the most commonly used instrument to assess which physical tasks induce breathlessness. It is a five-grade scale ranging from 0 (none – not troubled with breathlessness except with strenuous exercise) to 5 (‘very severe – too breathless to leave the house). Patients choose the most relevant description. Although widely used, the MRC scale may not be sensitive enough to detect small but potentially relevant clinical/day-to-day changes in breathlessness (Ries, 2006). Nonetheless, it is useful for detecting changes over time and in response to long term therapies such as pulmonary rehabilitation.

Baseline Dyspnea Index and Transitional Dyspnea Index

The Baseline Dyspnea Index (BDI) and Transitional Dyspnea Index (TDI) (Mahler et al, 2004) were developed to provide a more comprehensive assessment of breathlessness. The BDI evaluates three dimensions: functional impairment, magnitude of effort and magnitude of task at a single time point. In other words, it measures the extent of the task and how much effort was required. It rates patients’ breathlessness in each of these domains on a scale from 0 (no impairment) to 4 (severe impairment). A companion scale, the TDI, is used to monitor changes from baseline over time and can be used to assess the impact of therapeutic interventions (Ries, 2006). The BDI/TDI is likely to provide useful information about patients’ condition on a day-to-day basis.

University California-San Diego Shortness of Breath Questionnaire (SOBQ)

Originally designed as a screening tool for pulmonary rehabilitation, the SOBQ comprises 24 activity related items that assess associated breathlessness over the previous week (Eakin et al, 1998). In addition, patients are requested to rate additional questions relating to fear of harm from over exertion and shortness of breath. Since the SOBQ contains 24 items, its usefulness in everyday clinical practice is limited.

Chronic Respiratory Questionnaire

Guyatt et al (1987) developed an interviewer administered questionnaire, the Chronic Respiratory Questionnaire (CRQ), comprising 20 items focusing on four dimensions of illness: breathlessness, fatigue, emotional functioning and patients’ feeling of control over the condition. A self administered version has since been developed (Schunemann et al, 2005). The breathlessness component asks patients to identify five activities that have induced a state of breathlessness within the last two weeks. Severity is evaluated on a seven-point scale. The breathlessness subscale can be considered for use on its own (Ries, 2006). This?sub scale could be used in clinical practice.

Breathlessness and quality of life scales

A number of questionnaires evaluate the overall impact of disease on patients’ quality of life (QoL). Respiratory disease-specific QoL questionnaires may have subscales or components that assess the impact breathlessness has on people’s QoL. Most QoL questionnaires are too long to be applied in clinical practice. Although sub-components of such questionnaires may relate specifically to breathlessness, it may not be possible to use this in isolation from the rest of the questionnaire. Nurses should evaluate carefully the instructions for using the QoL instrument.

St George’s Respiratory Questionnaire

The St George’s Respiratory Questionnaire (SRRQ) (Jones et al, 1992) is a self administered 76-item questionnaire that measures three domains: symptoms, activity and impact of disease on daily life. Breathlessness is evaluated in terms of its impact on daily activities, for which there is a specific subscale called “activity”. It is also included in the symptom subscale, along with information on cough, sputum production and wheeze. The SGRQ has been translated into more than 100 languages and is one of the most commonly used questionnaires for evaluating treatments in clinical trials. However, it is time consuming to complete, a special scoring system is required and it has little clinical application.

The Dyspnoea-12

A relatively new instrument, the Dyspnoea-12, measures breathlessness severity (Yorke et al, 2010). It was derived from the largest pool of breathlessness descriptors assembled and more than 300 patients were involved. It provides an overall score for the direct effects of breathlessness incorporating its physical and affective aspects. The physical component includes items such as ‘my breathing requires more work’ and ‘my breathing is exhausting’. The affective component relates to the emotional impact of breathlessness and includes items such as ‘my breathing is distressing’ and ‘my breathing makes me feel miserable’. The score is calculated by adding up the responses for each item (0 for mild to 3 for severe). The total score ranges from 0-36, with 36 representing maximum severity.

The Dyspnoea-12 was developed using people with a diagnosis of COPD, heart failure or interstitial lung disease (ILD). This is a unique and important aspect as some people have more than one condition. For example, it is not uncommon for those with COPD to also have chronic heart failure, given that both conditions are associated with similar socioeconomic variables, especially smoking. In addition, the Dyspnoea-12 does not depend on a reference level of activity, such as walking up stairs or taking a bath, or any specific type of activity. The reference frame “these days” reflects how people currently experience breathlessness in their daily lives, as opposed to in response to a specific activity. The Dyspnoe-12 is simple and quick to use and should be useful as an assessment tool in clinical practice.

Conclusion

Because breathlessness is multidimensional, many questionnaires have been devised in an attempt to capture its different aspects. Most of those available were developed using people with COPD. Nurses need to consider carefully their application to other patient groups. Similarly, many questionnaires relate to activity limitation which, although an appropriate approach, may not be relevant to all patients, such as those who avoid activities due to fear of breathlessness and patients requiring palliative care. Questionnaires that appear to be clinically useful are single item tools and the Dyspnoea-12.

 

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