In May this year we asked the public about their experiences with nutrition support and advice following a cancer diagnosis. 117 people responded and allowed us to better understand the nutrition needs of people living with and beyond cancer.
The in-depth online questionnaire was devised by our in-house Research and Evaluation team, Medical Director Dr Catherine Zollman and Nutrition Lead Nicky Robinson. The questionnaire had several aims; with these aims we gleaned the following key findings:
To find out about people’s experiences of nutrition advice and support since their cancer diagnosis, including whether they had been given any advice or information from their oncology team and/or whether they had sought information for themselves.
90% felt they had needed information or advice on diet and nutrition as a result of their cancer diagnosis but only 41% were given information/advice or told where to find it.
75% of respondents had experienced weight changes as a result of their diagnosis or treatment.
People mostly reported that the information/advice they’d received had met their needs ‘partly’ (35%) or ‘a little’ (33%).
90% of respondents reported that they had found diet and nutrition advice from sources outside of their healthcare team.
61% said that there was further information they would have liked but were unable to find.
61% said that they had found information on diet, nutrition and supplements from more than one source contradictory or confusing.
For those respondents who had received/found information on diet and nutrition, 91% said they had made significant changes to their diet or eating habits.
When asked about what type of supplements/herbal remedies they had taken and when, the supplements that saw the biggest increases in usage by far were:
Vitamin D – 8% taking it before cancer diagnosis, 36% after treatment had ended
Turmeric/curcumin – 9% before diagnosis, 31% after treatment
Probiotic – 9% before diagnosis, 24% after treatment
Antioxidant complex – 2% before diagnosis, 15% after treatment
Omega 3/fish oil – 14% before diagnosis, 23% after treatment
Only 7% had received information or advice on supplements or herbal remedies from their medical team.
Only around half of respondents who had used supplements/herbal remedies had found them beneficial (52%).
53% of people had not informed their oncology team if they were taking supplements/herbal remedies at any point since their diagnosis.
Differences between groups
There were significant differences between groups based on when people were diagnosed (p<.05).
Only 31% of people diagnosed in the last year said they had been given nutrition information/advice or been told where to find it by their healthcare team. For people diagnosed in the last five years this figure was 48%, for people diagnosed in the last 10 years, the figure was 56%. For people diagnosed over 10 years ago, the figure was 27%. This finding is interesting as it indicates an increase in the number of people being given advice/info from over 10 years ago to within the last 10 years, but then this decreases by 24% from those diagnosed within the last 10 years to those diagnosed within the last year.
It could be that people diagnosed within the last year will have conversations about nutrition with their medical team at a later date; in the first few months the medical team’s focus is likely to be on active treatment.
The majority of people feel they need information/advice on nutrition following a cancer diagnosis but less than half are given it or told where to find it by their healthcare team. Most people go on to make dietary changes and/or take supplements anyway, after finding information/advice from their own sources. The main problem is that this information is often contradictory and people have to make their own judgements on which sources to trust. People who have accessed Penny Brohn UK nutrition services have mostly found them very beneficial although they would prefer more tailored advice and more guidance on supplements.