Assessing the Nutritional information available to pelvic cancer patients
If you wanted to get a source of good-quality lifestyle or nutrition information where would you go? Your GP surgery? Instagram? A nutritionist’s website? Would you look at the person’s credentials and where they are getting their information from or what they are basing their findings on?
Now imagine if you had cancer, something which could affect the types of foods you can eat, or even which nutrients you absorb. Additionally, cancer symptoms and side effects of treatments as well as symptoms of cancer itself can cause changes in eating behaviour, and other symptoms ie bowel movements, where nutrition advice could help.
It stands to reason that immediately after a cancer diagnosis that patients are considered to be more receptive to advice surrounding lifestyle modifications, such as dietary changes, which could potentially improve their quality of life, whether post treatment recovery or towards cancer survivorship.
OxBCNH experts found that 32% of pelvic cancer (cancer of the bladder, bowel, reproductive organs and anus) patients looked for lifestyle advice from sources other than their healthcare team, with the most frequently used source being the internet! Of course, the advice needs to be relevant, culturally appropriate and from a trusted source. Thankfully there are a myriad of sources out there – the only issue is, how much of these are trustworthy?
Naturally, if they find the nutritional guidance provision of healthcare providers suboptimal, patients will turn to online sources for their information. A team of OxBCNH researchers assessed both the quality and quantity of online patient information materials (PIM) using a checklist, for both pelvic cancer specific and cancer in general, from the NHS, NHS cancer centres and charity organisations. They looked at PIMs for nutrition advice, general health and weight management, and management of treatment side effects for generic and pelvic cancer.
They found 40 online PIMS from 9 different NHS sources and 8 charities. Sadly, there was no information regarding diet and nutrition for any cancer type, let alone pelvic cancer specific, from the NHS websites of England, Wales or Northern Ireland though NHS Scotland fared a bit better. NHS England is the preferred source of information for many patients, so it is disheartening that they do not provide this. Instead, all NHS websites signposted to other cancer charities.
Not all the NHS cancer centres provided online nutritional information. Of the ones that did, the PIMs tended to be generic, focusing on diet during treatment, such as how to manage treatment related symptoms. Conversely, PIMs from cancer charities covered a greater range of topics, and some cancer charities also provided cancer-specific PIMs. Our experts found that most cancer survivors do want advice on side effects management, but also weight management and could benefit from knowledge on improving low appetite and fatigue. This shows there is a gap between service provision and service need.
In terms of the content they provided, there was considerable variability. Whilst 5 of the 8 PIMs from cancer centres were high quality, 3 scored low in most of the categories assessed. Overall, cancer charities scored higher than cancer centres, and there was not enough online PIMs from the NHS to compare. As mentioned, PIMs need to be accessible. A joint commission agreed that cancer materials should be suitable to be read by 10-11 year olds, ensuring the majority of the population can benefit. No PIM scored as low at this level. 61.5% and 77.8% of PIMs from cancer charities and NHS/cancer centres respectively had a readability of 11-14 years, still within an acceptable reading grade.
The study benefited from using patient-public involvement (PPI) contributors, whom they recruited through advisory & support groups and web forums. This allowed our experts to see how beneficial, those who would actually be reading the PIMs think they are, and they identified points that went beyond evaluating their content and readability. They reviewed 11 PIMs, which had a range of readability and content scores. The contributors questioned the use of pictures as not being relevant. Somewhat in opposition to the expert’s analysis, the language was considered simple in most PIMs, with the consensus that most were easy to read and navigate. While they found the information was useful, most did not find it relevant to their current health status, but others, such as those newly diagnosed may. Whilst the study’s checklist did not allow them to assess the evidence base of the material’s content, which is important for assessing their quality, though the public contributors themselves believed the information to be adequate and up-to-date.
The study highlights that the main barrier for cancer patients accessing lifestyle information regarding cancer survivorship is that there is simply a lack of patient material from reliable sources out there. The material that is out there could be improved by having a lower readability score, so that more of the population can understand the information – whilst their contributors thought it was accessible, they may not be representative of all pelvic cancer patients.
So next time you go to look for nutrition information online, spare a thought for those recently diagnosed with cancer and the barriers they face in finding relevant, accessible and trustworthy lifestyle advice.
Saltaouras G, Lightowler H, Coe S, Brett J, Watson EK (2019) Availability and quality assessment of online nutrition information materials for pelvic cancer patients in the UK European Journal of Cancer Care 28:e13039.
Saltaouras G, Watson E, Coe S, Lightowler H, (2020) Diet and nutrition support after a pelvic cancer diagnosis: a cross-sectional study. Proceedings of the Nutrition Society, 79 (OCE2), E411.