People with head and neck cancer frequently have symptoms that are caused by their disease or by their treatments, which may significantly impact on their quality of life living with and beyond cancer. This international research survey captured a self-rating report by people who have had radiotherapy (RT) treatment for head and neck cancer about their experience of oral symptoms, including Dry Mouth (Xerostomia).
This survey was designed by patients, and then submitted for ethical approvals in collaboration with a healthcare researcher. The international survey was open to anyone over 18 who has had treatment for head and neck cancer, whether or not they currently have symptoms of Dry Mouth. The electronic survey was only in English and the ethical permissions granted that patients who wished to take part could request assistance if needed; due to illness, fatigue, confidence in accessing the internet, or English literacy. Participant recruitment was supported through a wide range of networks including healthcare practitioners, charities and patient support groups. The average time to complete the 18-item survey was under 10 minutes; including both multiple choice and open questions. The statistical analysis reflected correlations between the participant demographics and self-report of symptoms. An interpretive analysis of free text responses highlighted patient values and priorities.
Over 100 individuals responded, from across UK, US, Canada, Australia, India and mainland Europe. The analysis demonstrates patterns between the patient demographics, types of radiotherapy treatments, time since treatment, and current symptoms. This is the first time that this original dataset will be presented. The findings also generated insights into the self-reported impact of these symptoms on patients’ quality of life.
This study comprises important evidence of patients’ experiences and symptoms following RT treatment. The cross-sectional dataset also indicates the global view of recent and current RT treatment approaches. Future collaborative research by healthcare researchers, patient groups and relevant pharma is imperative. This research will be presented by a Patient Advocate.
Clinical trial identification
Legal entity responsible for the study
University of Central Lancashire.
Has not received any funding.
All authors have declared no conflicts of interest.