Head and neck cancer patients’ perspective of carer burden

There is a growing appreciation of the important role that carers have in supporting patients following treatment for head and neck cancer. We asked patients about the role fulfilled by their carer(s) and the support they give, and for their thoughts on the burden this placed on the carers. We did a cross-sectional survey of 751 patients with head and neck cancer who were alive and disease-free using two questionnaires: one combined study-specific questions about carers with questions from Khafif et al., and the other was the University ofWashington Quality of Life questionnaire version 4 (UW-QoL). There were 386 replies. Nearly half (46%, 162/354) had carers who were mainly family members. Patients identified their main roles as providing emotional support (75%), taking them to healthcare appointments (67%), cleaning the home (62%), and shopping for food (59%). Around a third felt that their care was a considerable burden, and a similar proportion felt that it was very hard for their carers. Patients over 65 years of age were the most likely to need a considerable amount of care and support, and those with low socio-emotional UW-QoL composite scores were most likely to need a considerable amount of care and support, to regard the burden on their carers as considerable, and to think that it was very hard for their carers to take care of them. The study emphasises the necessity to take account of the needs of carers. More research is required on the patient–carer relationship and how best to support it.