Determining patient and primary care delay in the diagnosis of cancer – lessons from a pilot study of patients referred for suspected cancer

BACKGROUND: There is no validated way of measuring diagnostic delay in cancer, especially covering patient and primary care delays. An instrument is needed in order to determine the effect of potential interventions to reduce delay and improve cancer morbidity and mortality. METHODS: Development of a postal questionnaire tool to measure patient and primary care time responses to key symptoms and signs. The pilot questionnaire was sent to 184 patients with suspected cancer. RESULTS: The response rate was only 85/184 (46.2%). Anxiety was cited as one reason for this low response. Patients returning questionnaires were more likely to be women and more likely to be younger. 84/85 (98.8%) provided consent to access medical records, and questions regarding health profile, smoking and socio-economic profile were answered adequately. Outcome data on their cancer diagnosis was linked satisfactorily and the question about GP-initiated investigations was answered well. Estimated dates for symptom duration were preferred for patient delays, but exact dates were preferred for primary care delays; however there was a significant amount of missing data. CONCLUSION: A more personal approach to the collection of data about the duration of symptoms in this group of people is needed other than a postal questionnaire. However elements of this piloted questionnaire are likely to figure strongly in future development and evaluation of this tool.