Head and neck cancer patients' recollection of their clinical characteristics

Patient-reported outcomes (PRO) are an important component of treatment evaluation. Typically they are completed by patients on paper, but through advances in technology such as mobile phone apps and websites, there is a great opportunity for electronic completion. It can be challenging, particularly at a regional or national level, to maintain accurate core clinical records on head and neck cancer (HNC) (baseline, recurrence, second primary, and further treatment), and these will influence PROs and the reporting of outcomes. In addition, with data security and confidentiality there is merit in undertaking anonymous surveys, but in this approach, there is a reliance on patients' recall. The aim of this study therefore was to compare updated hospital records with details completed by patients. In January 2019, 395 HNC patients who had been treated in 2015 and 2016 were sent a survey. They were asked to recall the clinical variables of gender, age at diagnosis, tumour site, tumour stage, and primary treatment, and these were analysed for agreement with the hospital records. The kappa statistic (KP) was used to measure the strength of agreement for categorical variables. There were 146 responders and one patient correctly stated that they did not have cancer. Five indicated further disease rather than primary cancer. Agreement between the hospital record and patients' recall was excellent for gender (KP=0.97) and age group (KP=0.92), very good for treatment (KP=0.79), and good for site of cancer (KP=0.61), but poor for stage of cancer (KP=0.18). In general, patients gave accurate accounts of these details apart from tumour stage.