The development of patient centred and individualised outcome measures and their use in complementary medicine research in the field of cancer

In evaluating potentially curative treatments for cancer the primary outcome, or desired effect, is usually survival. Consequently, although patient's quality of life is increasingly being measured in trials of cancer treatments, it is usually considered to be of lesser importance. The complexity of balancing benefits in terms of increased survival against worse quality of life becomes increasingly important in palliative care. However, when people use complementary therapies after a diagnosis of cancer they nearly always do so as an adjunct to conventional care – with much wider and individualised aims of symptom relief, improved wellbeing, and as a way to take some control and re-integrate themselves. Knowledge of peoples’ experiences of these outcomes is the basis on which appropriate outcome measures can be developed.

In addition to describing those quality of life questionnaires that have been developed for conventional treatments, I will discuss the development of an individualised tool Measure Yourself Concerns and Wellbeing, MYCaW. This allows patients to specify what their main concern is as well as measuring its severity and change over time. It is a questionnaire that collects both numerical data and data written in the patient's own words and a framework for analysing such data is also available. MyCaW has mainly been used in evaluating cancer support services and some results from these evaluations will be presented. In these settings, psychological and emotional concerns predominated and significant improvements were demonstrated. Patients also highlighted the importance of the supportive interaction they had with their therapists, other patients and the centre staff. Not only are patient-centred outcome measures vital if we are to carry out meaningful evaluations of interventions, but they may also have a role in helping clinicians to keep their focus on the patient as well as the disease.

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