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.

Loneliness and quality of life after head and neck cancer.

Loneliness is associated with a poor quality of life, mental illness, poor physical health, and premature mortality. Patients with head and neck cancer (HNC) are at risk of loneliness because of the effects of the disease and its treatment on important social interactive functions such as appearance, speech, facial expression, and eating. Patients treated for primary squamous cell HNC between January 2015 and December 2016 were surveyed in early 2019 using the University of Washington quality of life questionnaire version 4, the Cancer-related Loneliness Assessment Tool (C-LAT), and four nationally recommended indicator questions. The survey comprised 140 patients, with a mean (standard deviation) age at diagnosis of 63 (11) years. Tumour sites were oropharyngeal (42%), oral (35%), laryngeal (14%), and elsewhere (9%). In response to the question "How often do you feel lonely?" three-quarters said "hardly ever" and only 6% "often". Similar responses were obtained for the other three indicator questions. It is encouraging that a relatively small proportion had serious issues with loneliness. Similarly, responses to the C-LAT suggested that one-quarter had feelings of loneliness and a minority had serious problems. Patients who were younger, who lived in more deprived circumstances, who had advanced disease and had been treated with chemotherapy or radiotherapy reported greater levels of loneliness. Loneliness was associated with a worse overall quality of life, and worse physical and social-emotional function. Lonely patients need to be identified as early as possible so that support and interventions can be implemented and outcomes improved.