In this study, patient delay is defined as: 'the time between the onset of patients' experiences of symptoms which, in retrospect, they believe to have been due to the cancer, and presenting these symptoms to primary care', and primary care delay is defined as: 'the time between the presentation of these symptoms, or others that potentially may be cancer, in primary care and the onward referral of the patient to secondary care' .
Identification of patients
We identified and recruited adult patients with suspected cancer from the North East Wales Trust. We worked closely with the Trust's Cancer Office to identify urgent suspected referrals. We set out to recruit 190 patients in order to ensure representation of sufficient numbers of differing cancer sites. Letters were sent in mid January 2005 to the Cancer Leads of the nine cancer sites and flyers forwarded to general practices that refer patients to North East Wales Trust informing them of the commencement of the research project. The Cancer Office identified, on a weekly basis, all adult patients, by cancer site, referred under the urgent suspected cancer guidance, over a prospective period for four weeks in early 2005. In total 184 patients were identified.
Data collection from patients
Each identified patient was sent a pack which included a covering letter with a detailed information sheet inviting them to open the enclosed sealed envelope if they wished to take part in the research project or otherwise to return the pack to a Freepost address. The sealed envelope contained a covering letter welcoming the patient to the study, a consent form for access to their medical records and a questionnaire.
Part 1 of the questionnaire was specific to the patient's suspected cancer site. For each possible symptom for that cancer site, it asked the respondent how long before they saw their GP or practice nurse they had had their symptoms for, and how long elapsed between presenting their symptoms and referral. We deliberately asked for responses to these questions in either of two ways so that we could determine whether patients preferred to recall and enter an exact or an estimated date. The list of symptoms reflected the symptoms listed in the cancer referral guidelines for each specific cancer site . Hence we knew in advance that this sample would be able to provide data about these symptoms.
Part 2 dealt with health profile (asking respondents whether they had certain conditions in the past two years), smoking habits, and socio-economic profile. General comments were invited.
Packs were sent as soon as possible after the urgent referral was received by the cancer office, and in most cases this would have been before they were seen in secondary care. Checks were made by the Cancer Office to ascertain whether patients had died before reminder letters were sent at three weeks and a second reminder with full study pack at six weeks. All documents other than the questionnaire were translated into Welsh.
Cancer outcome data
Outcome data were obtained in July 2005 as either diagnosed or not diagnosed with cancer.
The data analysis was predominantly descriptive, and analysed using SPSS; and is presented with the appropriate statistics.