The experiences of young oral cancer patients in Scotland: symptom recognition and delays in seeking professional help

Objectives: To explore the early responses of young oral cancer patients in Scotland to the symptoms of their emerging condition, to understand the ways they seek help and to inquire into delay caused by not recognising symptoms associated with cancer. Setting: The survey was carried out in Maggie's Centres or in patients' own homes in Glasgow and Edinburgh among young patients diagnosed with oral cancer in the three years (2004-7) before the study. Methods: This study employed qualitative methods. Data were collected by interview using a semi-structured interview schedule. The interview transcripts were analysed using a thematic framework and with the aid of NVivo qualitative analysis software (Version 8). Results: Most of the cohort knew that smoking and alcohol could cause oral cancer. None thought it would happen to them. Descriptions of symptoms varied widely and several had used self-treatment provided from a pharmacy. There were various causes of 'patient delay' and self-treatment was not the only cause. Reinterpretation of symptoms without seeking professional help was not uncommon. Nobody suspected they had oral cancer until it was confirmed by their GP or GDP. All thought that something so small and painless couldn't be a serious problem. Conclusions: The study further confirms gaps in understanding and awareness of oral cancer. Most had heard of oral cancer but they didn't think their symptoms were indicative of cancer and they self managed the problem. The culture of not bothering the GP/GDP unless it was perceived as serious is a barrier to earlier access. Findings support that further public awareness of oral cancer and its symptoms is required to alert the public that if their symptoms persist beyond three weeks they need a professional opinion