Administration

The usual standard instructions for completing questionnaires are that they should be completed by the patient, without conferring with a relative or member of staff, whilst waiting in the clinic prior to seeing the doctor.

The advantage of administering questionnaires in the clinic is that the sequence of events and the environment can be controlled. If questionnaires are given to patients to complete at home, there is no control over when the questionnaire is completed, who completes it, whether help was given, whether the questionnaire is posted back, and whether individual items are not answered.

There may be scenarios where posting a questionnaire to the patient's home is the preferable option, for example when data are required at a key timepoint when patients are not due to be seen in clinic. Nevertheless, as with all 'non-standard' QL questionnaire administration, the reasons behind the course of action must be justified in the protocol, and consistency across treatment being compared should be maintained. For example, it is likely to be much better to post every questionnaire to every patient, than to do so on an ad hoc basis.

However, the practice of posting questionnaires to patients raises a number of concerns; including the fact that patients may have moved (confidentiality maybe breached if the new occupant opens the mail); patients may have died (relatives maybe distressed to receive mail for their recently deceased family); patients maybe in remission (and be distressed by being reminded of their cancer), and of course it is important to ensure that patients on long-term follow-up have consented to regular follow-ups.

Thus, although posting questionnaires appears an obvious and straightforward option, it may actually require more staff input and result in poorer quality data. Posting questionnaires to patients' homes requires consideration for the patient and their relatives, and if this approach is adopted a recommended routine is that a phone call is made prior to posting to determine that the patient is still alive and willing to complete the form.

Weinberger et al. [75] compared telephone, face-to-face and self-administration of the SF36 QL questionnaire. They investigated the relative advantages and disadvantages of each mode of administration, including response rates, expense, interviewer bias, patient burden, anonymity and interpretation of errors. The least effective mode was telephone administration, and although patients expressed a preference for face-to-face administration it provided a more optimistic picture of health than self-administration and of course required more personnel and was less convenient for patients.

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