Nurses, doctors and family members often underestimate the impact of those items which most distress the patient. Therefore it is important that the patients should complete the QoL questionnaire themselves. Patients may be influenced by the opinions of others when completing questionnaires.
Cook et al. (1993) compared the same questionnaire when interviewer- or self-administered, on a sample of 150 asthma patients. When using the self-administered version, patients recorded more symptoms, more emotional problems, greater limitation of activities, more disease-related problems and greater need to avoid environmental stimuli. On average, 47% of items were endorsed when self-administered, but only 36% when interviewed.
Thus it is advisable that patients should receive help only when it is absolutely necessary, and doctors, nurses and spouses should all be discouraged from offering help unless it is really needed.
However, some patients may be unable to complete the questionnaire by themselves or have difficulty understanding the questions. Examples range from vision problems and forgotten glasses, to cognitive impairment. In these cases help should be provided, as assisted completion is better than either total absence of data or incorrect information through misapprehension. Similarly, if a few patients are too ill or too distressed to complete the forms, someone familiar with their feelings may act as a proxy. Proxies are typically a "significant other" such as a partner, spouse or close family member, but may include staff such as a nurse who knows the patient well. For some trials, such as those in psychiatry or advanced brain malignancies, it might be anticipated that the majority of patients will be unable to complete questionnaires and it may be appropriate to make extensive—or even exclusive—use of proxy assessment. Proxy assessment may also be needed for young children who are unable to complete questionnaires, even though parents and other adults usually have a very different set of priorities from children, and value emotional and physical states differently. Sometimes it can be anticipated that a large proportion of the patients will become unable to complete questionnaires as the trial progresses, for example in trials of palliative care that involve rapidly deteriorating patients. In these cases the use of proxy respondents could be considered as an integral part of the trial. In general, however, proxy assessment is acceptable only as the last resort, and remains controversial.
The instructions to the patients should normally ask them to complete the forms on their own, that is, without conferring with others. The study forms should collect details of assistance or use of proxies.
The patient should complete the questionnaire without conferring with friends or relatives, and all questions should be answered even if the patient feels them to be irrelevant. Assistance should be offered only if the patient is unable to complete the questions personally.
WILL QoL FORMS INFLUENCE THERAPY?
There are differing opinions as to the value of having QoL forms available for use by the treating clinician, or whether they should be confidential. For example, those patients who are keen for their therapy to be continued may be reticent about revealing deterioration in QoL or side-effects of treatment if they believe that their responses might cause treatment reduction. Also, some patients try to "please" their clinician and nursing staff, and may respond over-positively. Although evidence for this remains scanty, there is support from studies showing differences between QoL assessments completed by self-administered questionnaire versus interview-administered questionnaire, in which interview-assisted completion resulted in reduced reporting of impairments. A tendency for "yea-saying" or response acquiescence when filling in QoL questionnaires has also been noted (Moum, 1988). Thus it can be an advantage to assure patients that the QoL information is confidential and will not be seen by the clinician, and some trials supply pre-stamped envelopes that are addressed to the Trials Office.
On the other hand, in some hospitals the clinicians and nurses use the QoL forms to assist with patient management—which is of advantage to the trial organisation in that it may increase compliance with form completion. In addition, there are considerations of individual and collective ethics. From the point of view of guaranteeing bias-free interpretation, there are arguably grounds to maintain—and assure the patient of—confidentiality. Thus there are both advantages and disadvantages to keeping the forms confidential and not using them to influence therapy, but in either case the procedures should be standardised and specified.
You will be given a folder of questionnaires and some reply-paid envelopes in which to return them. We would like you to complete one of these questionnaires just before you go to hospital at the start of each course of chemotherapy, for other treatment or at a routine check-up.
[Reply-paid envelopes are addressed to the Trials Office]
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