Development of QL questionnaires

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Some of the first attempts at measuring QL were LASAs (Linear Analogue Self-assessment Scales) (Fig. 6.6) [51,52].

Pain

Please indicate your current level of pain on this line

No pain Worst pain imaginable

Fig. 6.6 A Linear Analogue Self-assessment Scale (LASA).

On a LASA the patient indicates their current status by putting a mark on the 10-cm horizontal scale (when these scales were drawn vertically they were known as thermometers). The position of the mark is then measured and scored on a 0-100 scale. Advantages of LASAs are that they avoid the necessity to describe categories and that because a large range of scores is obtained, they may be more sensitive than limited answer scales in reflecting within-patient changes [53].

However, the disadvantages are that patients find them difficult to complete because of their unfamiliarity, scoring is time-consuming and scores maybe difficult to interpret. For example, what does a score of seventy-five actually represent? The same point on the scale may represent very different things to different patients, and thus they are not appropriate in situations where a range of states is possible, for example acute severe nausea and chronic mild nausea.

Because of these problems, the next step from LASAs was to divide the LASA line into categories (Fig. 6.7).

Pain

Please indicate your current level of pain on this line

No pain a little some moderate Worst pain imaginable

Fig. 6.7 A LASA scale with categories.

The splitting of the 10-cm line into suggested categories was an attempt to standardize patients' recordings but again interpreting a score of, say, seventy-five is difficult unless it is simply categorized as 'moderate.' The natural extension from this was simply to give the patient a limited choice of answers.

In 1932, Renis Likert invented a measurement method, called the Likert Scales, which were used in attitude surveys. They allowed answers that ranged from 'strongly agree' to 'strongly disagree.' The vast majority of 'standard' QL questionnaires now use these Likert scales (where patients are given a list of answers and tick the one most appropriate to them). Thus, in response to questions about their symptoms, or levels of functioning or psychological distress, patients tick a box indicating, usually, the equivalent of nil, mild, moderate or severe (Fig. 6.8). Although a word like 'moderate' will still mean different things to different people it is still easier to understand and report than a score. For example, it is much more understandable to say 20 per cent of patients had severe nausea, than 20 per cent of patients had a nausea score of >80 per cent.

Pain None A little Moderate Severe

Please tick the box to indicate your current level of pain

Fig. 6.8 A Likert scale.

When QL is being assessed and compared over a relatively long period, questionnaires can be administered at specific timepoints, often several weeks or months apart. However,

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Patient Diary Card

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Hospital Number

Doctor in Charge

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Date

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Please remember to bring this card with you at your next appointment.

If you can't keep your next appointment then continue to use the spare card, if you have one, and if possible post your completed card to us.

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Date:

Vomiting

Cough

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INSTRUCTIONS Please complete every evening after your last meal, even when you are in hospital, by writing the number of your answer in the appropriate box as follows:

Week 1

Mon ue

INSTRUCTIONS Please complete every evening after your last meal, even when you are in hospital, by writing the number of your answer in the appropriate box as follows:

Please give details of any other health problems here:

Week 1

Mon ue

on occasions such a schedule of administration will be inappropriate if, for instance, information is required on acute side effects, such as the duration of nausea and vomiting immediately following chemotherapy. To deal with this scenario, daily diary cards have been used to record symptoms that change quickly over time (Fig. 6.9).

The daily diary card (DDC) grew out of the idea that, in chemotherapy for lung cancer, it was felt that the main side effects were known but not their duration or the pattern of severity. Thus, the daily diary card was developed based on previous work in other conditions, such as the assessment of night cough in asthma patients and vaginal bleeding patterns. As patients complete the card each evening it was considered imperative to keep the number of questions to a minimum and for practical reasons to use a four or five point categorical scale. In the first MRC trial to use DDCs the consensus opinion was that the questions should address overall QL, a functional measure (physical activity), the main expected side-effect (nausea and vomiting) and two psychological items (mood and anxiety). These questions were changed in subsequent MRC trials depending on the research question.

Although the psychometric properties of the daily diary card have never been formally assessed, Fayers [54] argues that the data generated by its extensive use can be shown to be sensitive, valid and reliable.

The advantage of a daily diary card is that transient changes, such as nausea and vomiting after chemotherapy, or dysphagia after thoracic radiotherapy, can be monitored in detail. However, the disadvantages are that only a few questions can be asked, patient compliance is difficult to control and patients seem to lose interest very quickly. In addition, concern has been expressed that patients looking back at their history over three or four weeks may find it upsetting if they see themselves deteriorating.

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