“Listen to me”: understanding the experiences of patients with cachexia
26th July 2024
Cancer cachexia is a condition where people with cancer lose a lot of muscle, which makes it harder for them to do everyday activities. This condition affects up to 80% of cancer patients and significantly reduces their quality of life. Patients struggle with daily activities and maintaining their independence, and family members find it hard to help.
Researchers based at the Cicely Saunders Institute decided to carry out a review of current experiences of cancer cachexia from the perspective of patients and unpaid/family carers, to find out how patients and families cope with severe weight loss and muscle wasting, and how this impacts on their daily activities and their independence. The review also looked at the clinical management of their cachexia from the viewpoint of patients and the family members who care for them.
The researchers found that patients with cancer cachexia face considerable challenges with everyday activities. They struggle to keep their independence and fulfil their usual family roles, and this leads to distress. Carers felt powerless to help and both patients and carers experience feeling of sadness, boredom, frustration and guilt. Many patients and carers feel that doctors don’t acknowledge or manage cachexia well. Both patients and their family carers value personalised, flexible care that includes carers in physical activities or exercises as well. They also appreciate opportunities to talk about cachexia, which improves their understanding of health, nutrition, and their relationship with food.
Common themes that emerged from the studies included distress related to eating, misunderstandings about cachexia by both medical professionals and by wider society, and noticeable weight loss and other aspects of the condition leading to a loss of identity and social isolation. Most studies so far have focused on physical activity or exercise as interventions. Patients and family carers value educational activities as well because they help improve their quality of life. They highly value interventions that include family carers as well as patients.
Bowers M, Higginson IJ, Maddocks M. Patient and carer experiences of cancer cachexia and its management. Curr Opin Support Palliat Care. 2024 Jul 9. doi: 10.1097/SPC.0000000000000710. Epub ahead of print. PMID: 38980806.