Development of a Cancer Awareness Measure

Following a review of the literature, existing awareness questionnaires were examined and relevant items extracted. This was supplemented with a review of the ‘grey’ literature (i.e. unpublished surveys carried out by cancer charities and other organisations) to include items not published in academic journals. Following this review, an item pool consisting of 137 items was created. These covered a range of topics including awareness of warning signs and risk factors, cancer incidence and awareness of national screening programmes. Items were then excluded if they were poorly worded, used terminology not frequently used in the United Kingdom (e.g. Pap test) or were attitudinal in nature (e.g. ‘I believe there are no early symptoms of cancer’). Items relating to awareness of the purpose of screening, the benefits of early detection and cancer survival rates were also omitted from the measure because the primary focus was symptom recognition. In addition, the research team generated several items specifically for the instrument that had not been used in previous questionnaires.
Once consensus over the items had been reached, a first version of the cancer awareness measure (CAM) was circulated to a panel of experts (n=16) including academic researchers, cancer charity representatives, general practitioners, oncologists and experts in the field of questionnaire design, to ensure content validity and face validity. In addition, cognitive interviews were conducted with the general public. These encourage respondents to verbalise their cognitions, making it possible to identify areas where interpretation of the questions is ambiguous (Collins, 2003 (link)). Cognitive interviews were conducted with a small sample of participants (n=6) aged between 23 and 70 years. Minor modifications were made to the phrasing of several items as a result.
The final version of the CAM consisted of the following: (i) 10 items on awareness of warning signs (one open-ended question and nine recognition items); (ii) nine items on anticipated time to seek medical advice (asking about each of the warning signs); (iii) 10 items on barriers to seeking medical advice (covering a range of practical, service delivery and emotional barriers); (iv) 13 items on awareness of risk factors (one open-ended question, 11 recognition items and one asking participants to rank the importance of different types of risk factor); (v) seven items on cancer incidence (one asking about overall cancer incidence and six asking about the three most common cancers for men and women) and (vi) six items on awareness of NHS screening programmes (asking about awareness of the cervical, breast and bowel screening programmes and the age from which screening is offered for each).