Physical function and quality of life in cancer cachexia
Research type
Research Study
Full title
Exploring connections between changes in physical function and quality of life among people with cancer cachexia: An interview study
IRAS ID
337448
Contact name
Matthew Maddocks
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
0 years, 11 months, 1 days
Research summary
Cancer cachexia is characterised by ongoing weight loss. It is estimated to affect up to 80% of people with cancer and has substantial impacts on people's quality of life. While previous interview studies have explored people's experiences of the nutritional aspects of cachexia (e.g., distress about eating, and body image issues due to visible weight loss), there has been very little research into people's experiences of changes in their physical function (i.e., people's ability to conduct their daily activities and the things that are important to them). Understanding the range of quality of life issues which are experienced among people with cancer cachexia is important, because it can be used to design better treatments. Therefore, this interview study aims to explore connections between changes in physical function and quality of life among people with cancer cachexia, to help researchers design better treatments to improve quality of life for people with cancer cachexia.
We will recruit adults with cancer who have experienced recent, unintended weight loss, and who have experienced some change in their physical function. We will ask participants to complete a short socio-demographic questionnaire, which will take around 5 minutes, and then to take part in one interview within the next month. The interview is expected to last around one hour and will ask participants about changes in their daily activities and impacts on their psychological wellbeing and relationships.
We will be recruiting participants from King’s College Hospital NHS Foundation Trust and Guy’s and St Thomas’ NHS Foundation Trust. The research team are supported by the National Institute for Health and Social Care Applied Research Collaboration South London, Horizon Europe, Innovate UK, and Cicely Saunders International.
Lay summary of study results:
The study showed that many people felt their lives had become smaller and slower. Instead of feeling like they were living, people often felt they were just existing or ‘getting by’. Everyday life had been stripped back to the basics, and some participants felt they had lost their sense of purpose. Many described feeling like a spectator in their own life.People also talked about their world shrinking. They no longer felt able to do the things they used to enjoy, because their confidence, motivation, energy or physical strength had reduced. This often created a vicious cycle: feeling low made it harder to take part in activities, and doing less made mood and motivation even worse.
Time itself seemed to change too. For many, days felt long and slow, which added to frustration and feeling worn down.
Physical tiredness had a big impact on people’s independence. Because they felt weak or exhausted, they had to rely more on others, which was difficult emotionally. Many struggled with losing roles they once held in their family or household and felt guilty for ‘being a burden’.How other people reacted also played a role. Loved ones often tried to help and protect them, but this sometimes made participants feel they had even less freedom. Although support was appreciated, it could also create tension when others made assumptions about what they should or shouldn’t do.
Participants tried various strategies to improve their strength and energy. Many focused on eating more to gain weight or muscle because they believed this would help them feel less tired and more capable. Staying physically active, often through simple, everyday movement like walking around the house, was also seen as important. However, people felt cautious about more structured exercise, and pushing themselves often led to more fatigue afterwards.
Some participants described adapting the way they managed their daily activities. They learned to pace themselves, take rests, and change how tasks were done to work with their limited energy. This wasn’t always easy, but it helped them cope with their changing abilities. Some people found that depending on others didn’t always feel negative, sometimes it gave them a deeper connection and a sense of autonomy in a different way.
Overall, the study showed that people’s everyday lives were affected by fatigue and physical changes and this affected their relationships and wellbeing. But it also showed how individuals found ways to adapt, maintain independence where possible, and focus on what helped them feel more in control.
REC name
Wales REC 3
REC reference
25/WA/0037
Date of REC Opinion
28 Jan 2025
REC opinion
Favourable Opinion