Aims:
It is well-known that up to 40% of carers of patients with head and neck cancer experience significant distress during treatment. This study aimed to examine the incidence and causes of distress over the course of treatment using an electronic, web-based screening tool for carers.
Methods:
A longitudinal cohort design was used to investigate the incidence and factors contributing to distress among carers of patients undergoing radiotherapy treatment for head and neck cancer. Carers of patients with head and neck cancer undergoing radiotherapy were enrolled at radiotherapy planning, and completed an electronic, carer reported screening tool, “ScreenIT” weekly during treatment. Cohort data was analysed descriptively.
Results:
From June 2015 – September 2018, 141 carers completed ScreenIT during their family members radiotherapy treatment for head and neck cancer. Across the 141 carers, 393 entries were recorded (m = 2.8, range 1-10). The majority of carers identified as spouses (n= 283, 72%) or son/daughter (n= 78%, 18%). More than half the carers reported distress at at least one timepoint during treatment (55% with score >4 on Distress Thermometer). The factors contributing to distress included emotional (worry 32%, fears 12%, sadness 12%), patient’s physical symptoms (eating/drinking 27%, fatigue 28%, sleep 13%, pain 12%, mouth sores 11%), and practical (knowing what food/drinks will be suitable 20%, planning meals 14%, and mealtime preparation/cooking 10%). Only 4% of carers wished to discuss their concerns with a health professional.
Conclusions:
During radiotherapy treatment, carers of patients of head and neck cancer commonly report distress related to emotional, physical and practical concerns, however very few wished to discuss their concerns with a health professional.