Abstract
BackgroundThe duration between first symptom and a cancer diagnosis is important because, if shortened, may lead to earlier stage diagnosis and improved cancer outcomes. We have previously developed a tool to measure this duration in newly-diagnosed patients. In this two-phase study, we aimed further improve our tool and to conduct a trial comparing levels of anxiety between two modes of delivery: self-completed versus researcher-administered.MethodsIn phase 1, ten patients completed the modified tool and participated in cognitive debrief interviews. In phase 2, we undertook a Randomised Controlled Trial (RCT) of the revised tool (Cancer Symptom Interval Measure (C-SIM)) in three hospitals for 11 different cancers. Respondents were invited to provide either exact or estimated dates of first noticing symptoms and presenting them to primary care. The primary outcome was anxiety related to delivery mode, with completeness of recording as a secondary outcome. Dates from a subset of patients were compared with GP records.ResultsAfter analysis of phase 1 interviews, the wording and format were improved. In phase 2, 201 patients were randomised (93 self-complete and 108 researcher-complete). Anxiety scores were significantly lower in the researcher-completed group, with a mean rank of 83.5; compared with the self-completed group, with a mean rank of 104.0 (Mann-Whitney U = 3152, p = 0.007). Completeness of data was significantly better in the researcher-completed group, with no statistically significant difference in time taken to complete the tool between the two groups. When comparing the dates in the patient questionnaires with those in the GP records, there was evidence in the records of a consultation on the same date or within a proscribed time window for 32/37 (86%) consultations; for estimated dates there was evidence for 23/37 consultations (62%).ConclusionsWe have developed and tested a tool for collecting patient-reported data relating to appraisal intervals, help-seeking intervals, and diagnostic intervals in the cancer diagnostic pathway for 11 separate cancers, and provided evidence of its acceptability, feasibility and validity. This is a useful tool to use in descriptive and epidemiological studies of cancer diagnostic journeys, and causes less anxiety if administered by a researcher.Trial registrationISRCTN04475865
Highlights
The duration between first symptom and a cancer diagnosis is important because, if shortened, may lead to earlier stage diagnosis and improved cancer outcomes
The aim of this paper is to report the further development of the ‘DELAYS’ tool, renamed the Cancer Symptom Interval Measure (C-SIM), through in– depth cognitive testing, and its testing in a randomised controlled trial (RCT) comparing different methods of delivery
Time intervals in the diagnostic journey Whilst the actual time intervals in the diagnostic journey are not reported in this paper, we developed, a protocol for changing reported estimated dates into pseudo-exact dates that permit the calculation of time intervals based upon the responses obtained (Additional file 4)
Summary
The duration between first symptom and a cancer diagnosis is important because, if shortened, may lead to earlier stage diagnosis and improved cancer outcomes. We have previously developed a tool to measure this duration in newly-diagnosed patients. In this two-phase study, we aimed further improve our tool and to conduct a trial comparing levels of anxiety between two modes of delivery: self-completed versus researcher-administered. Mortality from cancer is worse in the UK than most other European countries [1,2] The reasons for this are multi-factorial, but diagnostic delays and consequent later stage diagnoses are likely to be major contributory factors [3]. In the UK, and elsewhere, there has been a drive in policy towards early, and more timely diagnosis of cancer; for example the National Awareness and Early Diagnosis Initiative (England), the Detect Cancer Early Initiative (Scotland) and the International Cancer Benchmarking Partnership (several countries)
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