In 2021, 36 people with desmoid tumours kindly answered an online anonymous questionnaire asking them about 5 things:

their personal details e.g. age, sex, ethnicity, relationship and employment status
their health characteristics e.g. tumour location & size, if they had other health conditions, were having treatment or taking pain medication
their quality of life
what foods they typically ate
if they had ever tried to make dietary changes to improve their health or wellbeing

The goal of this was to understand what people with desmoid tumours are eating, what their quality of life is like and whether they had tried making any dietary changes to improve their wellbeing. And then to look at relationships between these areas… for example, if people had a better quality of life, did they also eat better?