Is the Satisfaction with Cancer Information Profile (SCIP) valid for tailoring information for patients with head and neck cancer?

In general, patients with cancer receive high-quality standard information [1] but often report a mismatch between their individual informational requirements and that actually provided [2‐4]. It has been suggested that, while a common baseline level of information should be provided, patients would benefit from information provision tailored to their individual needs [5]. This suggestion has been supported by the National Cancer Alliance [6] which recognises that generic information might not fulfil the patients' requirements. Studies of patients with head and neck cancer (HNC) for example, revealed a need for more information about treatment options and the impact of treatment than the operation itself [7, 8].

The assessment of quality of information can take many forms, from 'objective' evaluations of the accuracy of content, readability etc. [1] to more 'subjective' indices such as the patient's preference for [9, 10] or satisfaction [11, 12] with the information provided. While the former may have more relevance for issues surrounding patient knowledge and informed consent [13], the latter have been found to have an impact on clinical outcomes: for example, a recent study that found that lower levels of satisfaction with information about treatment were predictive of worse psychological outcomes in the longer term [3]. A recent review of the literature [4], however, found no assessment methods that took into account the amount, content and timing of the information about treatment for aspects such as recovery, side-effects and long-term consequences. Though some measures of informational need in cancer exist [14‐16], they fail to capture the patient's perspective in terms of whether they have received too much or too little information and the level of information supplied. The recognition of the potential for different information needs for different types of cancer led to the development of the Satisfaction with Cancer Information Profile (SCIP) [17]. The SCIP has been validated as a reliable measure of satisfaction with information about treatment, responsive to change [3, 17] and it has been suggested that this measure might guide a programme of tailored information provision. For the SCIP to be used for this purpose, however, requires that it be able to discriminate between different levels of individual satisfaction, and although validated in terms of being responsive to change, previous studies have not examined this aspect of the SCIP's validity. The SCIP might inform the selective provision of information to patients in two different ways. First, individual responses to the 14 items contained in the first subscale of the SCIP may be used to determine how information provision might be improved, as suggested by others [10]. For this purpose the discrimination of each item and the discrimination and reliability of the whole 14-item scale are of interest: if an individual item is insensitive to individual differences, it will be of limited use in tailoring interventions. Second, if there is an underlying structure to patient satisfaction with information (as has been reported for the Satisfaction with Information about Medicines Scale [18]), then information might be tailored on the basis of the level of satisfaction with each dimension. This might be required if resources do not allow for the tailoring of information to a precise (i.e. item-by-item) degree. For this purpose the discrimination and reliability of the dimension sub-scales would be of interest: if the sub-scales are unreliable or fail to discriminate between patients then they will be of doubtful value to inform focused interventions. This study therefore sought to validate the SCIP as a discriminative measure as a first step in establishing its usefulness as a guide to tailored information provision.

For a measure to be useful in guiding tailored information it must be able to discriminate between the differing needs of individuals on a number of levels. Both sections of the SCIP showed good discrimination at the level of total satisfaction (SCIP-A Delta = 0.90; SCIP-B Delta = 0.93), demonstrating that the measures should prove useful in determining which patients are in need of further information in general. Additionally the SCIP-A further subdivided into three coherent, correlated but distinct areas of satisfaction (unwanted effects, long-term effects and financial/social support). While the first two of these subscales had acceptable reliability and all had adequate discrimination, the financial support subscale was low in reliability. Since this subscale comprised only three items, this is perhaps not surprising: further development in measuring this aspect of patient satisfaction is required. However, it seems likely that the three subscales will also prove useful as discriminating measures of patient satisfaction within the broad domains so identified.

At the most patient-specific level of discrimination (discrimination by item) some items proved more discriminating than others, particularly those of the SCIP-A. This justifies the consideration of item-level responses, since total satisfaction score was not consistently related to item scores, and suggests that these items will be the most effective in identifying areas for additional or tailored provision of information.

As expected, those items uniformly high in satisfaction across the sample were less useful in specifying how information provision might be improved: this was especially the case for the SCIP-B as the result of a 'ceiling effect' for all of the items except the provision of written information. Questionnaires measuring general or overall satisfaction often suffer from this same lack of variability and it may be that the response scale of SCIP-B should be further adapted to increase the spread of scores [22].

We envisage that the SCIP will be useful in clinical settings, research and audit. As a discriminating measure, it should prove possible to tailor information provision at the individual or group level, with the SCIP administered immediately after the initial consultation, or indeed at any stage in the course of treatment. For research, the SCIP has now been validated for discriminative and evaluative purposes and has been shown to be sensitive to individual differences and change over time. For audit, the patient's overall level of satisfaction with information provision may be assessed, and once again, changes in satisfaction during the audit cycle noted.

The result of this study may, of course, reflect the particular concerns and response characteristics specific to patients with head and neck cancer. It is possible that some or all of these concerns extend to patients with other forms of cancer, but we suggest that the SCIP be piloted and further adapted (if required) before use in studies of different populations.

The SCIP proved to be a reliable and discriminating measure of satisfaction suitable for guiding the tailoring of information for patients with head and neck cancer. The SCIP-A may be used to tailor the provision of information based on total satisfaction score, subscale scores and item scores. The SCIP-B is better suited to tailoring information at the level of total satisfaction since it appears to be uni-dimensional and comprises items with low individual discrimination.