Do symptom experience or health literacy impact the timely diagnosis of oesophageal and gastric cancer? A mixed-methods study
Over 15,000 people are diagnosed with oesophageal and gastric cancer in the UK each year, with less than 20% surviving for 5 years. Increasing symptom awareness to encourage prompt help-seeking, and improving timely investigations and referral for specialist care, are priorities for improving outcomes. This mixed-methods study aimed to explore factors influencing timely diagnosis of oesophageal and gastric cancer.
Adult patients, newly diagnosed with oesophageal or gastric cancer at two hospitals in the East and North East of England, were consecutively approached over an 18-month period. Participants completed a questionnaire using validated items to explore symptom experience and help-seeking, diagnostic intervals, and aspects of health literacy using domains from the Health Literacy Questionnaire. Guided by their responses, participants were purposively sampled by age, gender, location and type of cancer for semi-structured, face-to-face in-depth interviews conducted within 10 weeks of diagnosis. Interviews explored symptom experience, help-seeking, and aspects of health literacy, including accessing, understanding and using health information, and navigating healthcare systems. Data were analysed used descriptive and univariable statistics, and thematic analysis. The final overarching mixed methods analysis is underway.
127 participants were recruited (39% response rate), 109 (86%) within 6 weeks of diagnosis. Participants were aged 44–96 (median 71) and predominantly male (n=102, 80%). Most had oesophageal cancer (n=102, 80%), and 64 (50%) were late-stage at diagnosis. The commonest symptoms experienced prior to diagnosis varied between cancers: for oesophageal cancer the commonest were difficulty swallowing (n=66, 65%) and painful swallowing (n=55, 54%), while for gastric cancer the commonest were fatigue/tiredness (n=20, 80%) and weight loss (n=13, 53%). The mean patient-reported time from noticing their first symptom to diagnosis (Total Diagnostic Interval, TDI) was 79.5 days (IQR 44.5-140.5). Decreased appetite and upper abdominal pain were associated with a longer TDI (p=0.027 and 0.034 respectively). Participants demonstrated high health literacy ability in engaging with healthcare providers (mean 4.18) and understanding information (mean 4.28).
26 interviews were conducted (age range 55-88;18 male; 15 with oesophageal cancer). ‘Heartburn’, ‘indigestion’ and ‘reflux’ were common descriptions of multiple upper gastrointestinal symptoms, from mild soreness through to severe pain. Many used medications to alleviate symptoms, with help-seeking usually prompted by increased severity of symptoms or perceived lack of control. When engaging with healthcare professionals, most felt able to talk with them but some felt unsupported, describing how they consulted multiple times prior to referral. Most participants showed confidence in navigating the healthcare system, from using community pharmacies through to primary and secondary care.
This study suggests that patients and doctors may respond less promptly to some symptoms of oesophageal or gastric cancer than others. The findings could influence the development of targeted awareness campaigns, and strategies enhancing GP-patient communication and timely referral.