Getting the Best Nutritional Advice with Cancer

Findings from a UK survey on the nutritional advice given to people with a cancer diagnosis. Research for Penny Brohn Cancer Care, May 2006.

Executive Summary

 Penny Brohn Cancer Care set out to gain insight into the experiences of people with cancer regarding the accessing of information on diet and nutrition. The charity did this by conducting two national surveys of the general cancer population and its own service users. The rationale behind this project was the anecdotal evidence reported by the charity’s therapy team showing that service users of the charity were generally not receiving dietary guidance or being encouraged to adopt a healthy diet by their healthcare professionals. This often led to them conducting their own investigations into nutrition and cancer and collecting information from sources of questionable quality. Coupled with this was the growing evidence of the importance of good nutrition for general health and wellbeing and the emerging evidence of a role for healthy eating in supporting the health of those with cancer.

Objectives for this project were to determine whether the general cancer population (identified through mailing all UK cancer self help and support groups) and our service users, wanted more dietary information than they received following a diagnosis, and to establish how much they were given and by whom. The charity wanted to know more about the information those with cancer were given and determine some idea of the need for this
information by evaluating the number of people who experienced weight changes following their diagnosis and treatment. From Penny Brohn Cancer Care service users we wanted to establish whether receiving dietary and nutritional information from the charity led to them changing their diet, what changes they made and how long they maintained them.

Data were collected using a survey approach from 1288 cancer self help and support group users (the Support Group Survey) and 358 Penny Brohn Cancer Care past users who had attended a residential course at the Centre (the Bristol Survey).

Results from the Support Group Survey showed that the majority of people with cancer (82.9%) were not given dietary advice by a member of their healthcare team when diagnosed and neither were they directed elsewhere for this information (93.4%).

The majority of participants of both the Support Group Survey (61.3%) and the Bristol Survey (80.3%) said that they wanted more information on healthy eating than they received. Despite this, when those completing the Support Group Survey were asked whether they had asked anyone in their healthcare team for this information over three-quarters (76.6%) stated that they had not. Over a third (38.2%) of this group did, however, seek information outside of their healthcare team. 51.2% of these people then told a member of their healthcare team that they had sought this information.

Participants completing the Bristol Survey were asked when they would like to receive dietary information and the most frequent response (41.1%) was “at the point of diagnosis”. 47.4% of the Bristol Survey respondents also said that they had received different dietary advice from people following their diagnosis.

The Support Group Survey participants were questioned about weight changes following diagnosis and treatment. Over three-quarters (75.9%) said they did experience weight changes. Only 14.7% of these people were given information from their healthcare teams on how to achieve a healthy weight but of those, 60.9% felt that this information had helped them to achieve a healthy weight.

Almost all participants (98.9%) completing the Bristol Survey had received some form of healthy eating information from Penny Brohn Cancer Care and the majority of these people changed their eating habits after they were given this information (97.5%). 79.6% of people said that they increased the plant foods in their diet and 64.8% said that they decreased the saturated fats. Over 80.0% of people said that they maintained the dietary changes for over a year and just over half (50.6%) of people found that these changes helped them to maintain a healthy weight. 73.5% of people informed their health professional of the dietary changes they had made.

An overwhelming majority (96.7%) of those that completed the Bristol Survey said that they thought the healthy eating information they received from Penny Brohn Cancer Care was
important to their recovery. Of those that completed the Support Group Survey, 94.5% said that they thought healthy eating was an important part of their recovery.

Where it was thought particularly pertinent to the survey objectives, the data were analysed in relation to demographic factors. Key findings of these results with regard to the Support
Group Survey include the fact that more women (84.8%) than men (77.7%) did not receive dietary advice from their healthcare teams, despite the fact that more women (63.5%) than men (54.5%) wanted this information.

These results also show that people with breast cancer were the least likely to receive dietary advice from a healthcare professional (88.3% received none), whereas those with head and neck cancers were the most likely to receive this information (62.5% received none). Even though people with breast cancer were the least likely to receive dietary guidance they were the group most likely to experience an increase in weight following diagnosis and treatment (52.1% of this cancer type). Those with stomach cancer were the most likely to experience a weight decrease (72.7%).

The results of both surveys clearly indicate that people with a cancer diagnosis were not routinely given, or directed elsewhere, for information on healthy eating by their healthcare teams. This was despite the fact that most people wanted such information and one explanation is that it appears the majority of people were not asking for the information from their healthcare teams.

The data on weight changes suggest that there is a need for dietary guidance, particularly as over half of participants in both surveys said that healthy eating information or advice helped
them to achieve and maintain a healthy weight.

The desire, and possibly the need, for dietary information have led people to carry out their own investigations into nutrition and cancer. The concern is that many are relying on sources that are of questionable quality. Also, with lots of information available, some people are finding that they are receiving different advice from people which could cause confusion. It was encouraging that relatively high numbers of people told their health professional of dietary changes that they had made.

The findings from the Bristol Survey highlight the fact that with clear guidance people can make positive dietary changes that can be maintained for the long-term. The results from these surveys have prompted Penny Brohn Cancer Care to outline recommendations calling for further assessment of the dietary information that is given to those with cancer by health professionals and the development of consistent guidelines to be used across all cancer networks. The charity also recommends that other cancer networks follow the lead set by
Avon & Somerset Cancer Network in trialling the use of Penny Brohn Cancer Care’s Healthy Eating Guidelines in their own networks. Finally, the charity is calling for more research into all aspects of nutrition and cancer survival.

It should be made very clear that the charity does not wish to lay the blame of the lack of dietary guidance for those with cancer on health professionals, who work in extremely challenging situations and, until this time, have had very little guidance on this issue. We hope that this report will raise awareness on this subject and ultimately lead to the development of clear guidelines for health professionals enabling them to provide the best nutritional advice and support for their cancer patients. 

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