Patient Experienced Side Effects and Adverse Events after Cancer Treatment - Patient Initiated Research

Abstract

Background  In the literature radiation of head and neck cancer (HNC) is followed by late side effects for more than a third of the patients. However, nearly all patients seem to experience side effects. The aim was to collect the multitude of these experiences through a patient-developed detailed questionnaire.

Methods  77 of 117 patients responded to a validated questionnaire from the Danish HNC patient network, age 61 (32 - 90) with 5 years (0 to 32) post treatment period.

Results  99% of the patients experienced at least one side effect, 67% more than twenty symptoms categorised into mouth complains, swallowing and eating problems, affected speaking ability, pain and fatigue during their daily living. Ten years survival was the only significant prognostic factor OR 0.13 (CI 0.02-0.81). Only swallowing and eating problems were significantly reduced over time (p=0.048) and in relation to calendar period (0.049), but not with increasing age.

Conclusion  The patients experienced pronounced sequelae, independent of gender, age and treatment/intervention.