Increasing symptom awareness, encouraging help-seeking, and facilitating timely referral are key for improving cancer outcomes, particularly for cancers such as oesophageal and gastric (stomach), where five-year survival is less than 20%. In this research, I used multiple methods to explore factors that influence timely diagnosis of these cancers from a patient's perspective, with a particular focus on health literacy (accessing, understanding and using health information, and navigating healthcare systems).

I started by exploring current knowledge in this field before conducting a systematic review investigating health literacy in the timely diagnosis of symptomatic cancer. Literature was searched from January 1990–May 2017 using six bibliographic databases. I screened 2304 titles/abstracts, assessed 26 full-text papers and included three, although they were methodologically weak, therefore limiting the conclusions.

To examine pathways to diagnosis for oesophageal and gastric cancer, I conducted a questionnaire study of newly diagnosed patients across two hospitals in the East and North East of England. 127 participants were recruited (39.6% recruitment rate), aged 44–96 (median 71); 102 male (80%). Most had oesophageal cancer (n=102, 80%); 64 (50%) of the total cohort were late-stage at diagnosis. Common pre-diagnostic symptoms varied between cancers (oesophageal: difficulty swallowing (n=66, 65%), painful swallowing (n=55, 54%); gastric: fatigue/tiredness (n=20, 80%), weight loss (n=13, 52%)). The questionnaire included two domains (engagement, understanding) of the Health Literacy Questionnaire with participants demonstrating high health literacy (mean 4.18 and 4.28, score 1-5). The median time from noticing the trigger symptom (prompting help-seeking) to diagnosis was 81 days (IQR 45-137.5, n=107).

Twenty-six participants were purposively sampled, from questionnaire respondents, for face-to-face interviews (aged 55-88, 18 male, 15 with oesophageal cancer). I undertook thematic analysis to explore participant accounts of their pathways to diagnosis, identifying that the symptom nature was important for appraisal, while health literacy ability influenced the health system interval. Descriptions of ‘heartburn’, ‘reflux’ and ‘indigestion’ differed between participants, suggesting these terms may introduce uncertainty in relation to symptom experience.

This is the first study to explore the role of health literacy in the timely diagnosis of symptomatic cancer, and pathways to diagnosis for oesophageal and gastric cancers, from a patient’s perspective. Findings provide important insights for the development of targeted awareness campaigns and strategies enhancing GP symptom exploration.