Measuring dietary intake

[Midnattsol]

I've been thinking about how best to survey dietary intake in a population with cognitive impairment and/or low cognitive stamina.

Food Frequency Questionnaire
Typically for a survey, one could use a food frequency questionnaire that consists of a finite list of foods and beverages with response categories to indicate usual frequency of consumption over the time period queried. To assess the total diet, the number of foods and beverages queried typically ranges from 80 to 120 (copied from NIH).

This is easy to distribute, but gives rather limited information, and while it is said it has a low cognitive burden, I know a lot of people who complain about the mental arithmetic required to answer the usual frequency of consumption of a specific food over the past year (typical period of time for these type of questionnaires).

24 hour recall
Another commonly used option are 24 hour recalls, where a recall of whatever has been eaten the last 24 hours is taken either through an interview with a person or through an online solution like this: https://intake24.co.uk/info/recall Ideally, more than one interview is performed to get multiple days of information.

A thorough interview could take >1 hour, making it difficult for people with low stamina, and the recall part makes it difficult with cognitive impairment. The online solutions could also be too much cognitively, lots of menus and clicks to get through.

Diet record
Participant writes down everything they eat throughout a given time period (3-7 days most common, one day should be a weekend-day). The idea is that the record is updated after every meal to avoid having to recall what has been eaten previously that day.

I think an online version of a diet record would be easiest. The difficulty is the lack of prompts for food/drink that is often forgotten when doing a 24 hour recall interview, such as supplements, drinks in general, spreads such as butter on bread and sugar/milk etc in coffee/tea, snacks or small meals between the main meals of the day.

Thoughts?

 

[Wonko]

Such things become all consuming - there is no time to eat, or do anything else, while trying to remember/time things - and things get missed, days get horribly distorted.

It is not a nice way to live.

 

[Midnattsol]

Such things become all consuming - there is no time to eat, or do anything else, while trying to remember/time things - and things get missed, days get horribly distorted.

It is not a nice way to live.

That's an important point. I've had patients that have filled out food records who say knowing that they are supposed to write down everything they eat makes them eat differently so it is easier to write down. Also obviously there are other reasons for these records not working out.

 

[Creekside]

The records really need to be done immediately. Human memory is too fallible and subject to self-falsification or simple confusion. Maybe I remember eating three pieces of chocolate, but was that yesterday or the day before, or maybe even the week before?

The little extras are hard to keep track of: spreads, seeds or berries in/on a food, etc. They might be small amounts, but they can have a significant effect. There are also the foods/ingredients that you decide are safe, so you don't bother adding them to your journal, but ME changes over time, so the safe foods may become unsafe, but you are no longer recording them in your journal.

My food/activity/symptom journal goes back to 2001. It's definitely changed in details since then. I admit that I do leave out details that I probably should keep, but overall, it's been very useful, revealing correlations I probably otherwise wouldn't have noticed. I think it also helps me stay aware of what is in those food items. My journal is on paper. I keep a clipboard next to my usual dining spot, with three colours of pens ready. People with the latest in personal electronics might be happier using that media. People with severe ME might have problems with any method, although if they are your most desired subjects, a camera (or several) might allow someone else to collect/process the data.

Food frequency surveys will probably be useless. The list of foods will either be too limited or too long for people to put up with, and you get those memory problems and decisions of whether to be completely honest (guilty about junk food, etc).

The recall options seem like more effort for less quality than keeping immediate personal records.

My suggestion: offer some formats for paper records (maybe print a convenient to carry pad) and some options for electronic devices ( a simple app?). Allowing freeform records would require too much effort for whomever has to input that data for whatever uses you plan. My scribbles and shorthand wouldn't make sense to anyone else. For that matter, my early records are probably undecipherable by me now. BTW, it's disturbing how grimy those old pages get, from hand grease, graphite/ink spreading, etc.

 

[Trish]

One option for those with brain fog and who have trouble remembering what they have eaten each day might be to suggest they photograph each plate/bowl of food on their phone to use as an aid to remembering when they fill in their record for the day.
They would, of course, have to remember to take the photos.

Edit to add. I remember hearing about people agreeing to be filmed during a meal, or maybe it was for a day, and what they actually ate being compared with what they remembered eating. They ate a lot more than they remembered.

 

[Creekside]

They ate a lot more than they remembered.

Yes, and it's probably not even conscious error. People's memories get adjusted by what they want to believe. Their guesses about how much they ate would probably be more erroneous over time, but the 'adjustment' process probably starts immediately.

 

[Midnattsol]

The records really need to be done immediately. Human memory is too fallible and subject to self-falsification or simple confusion. Maybe I remember eating three pieces of chocolate, but was that yesterday or the day before, or maybe even the week before?

Yeah, the only reason I can do a recall is that I eat more or less the same throughout the week, so there are very few things to remember.

The little extras are hard to keep track of: spreads, seeds or berries in/on a food, etc. They might be small amounts, but they can have a significant effect. There are also the foods/ingredients that you decide are safe, so you don't bother adding them to your journal, but ME changes over time, so the safe foods may become unsafe, but you are no longer recording them in your journal.

I'd like to include a question about foods that are avoided (or foods that have previously been excluded from the diet for some reason) and/or cause some sort of symptom aggrevation. But at the same time asking about everything could be a lot.

I remember one patient that came in when I was interning as part of my studies, he had great records of food triggers, and he knew how much of the different foods he could tolerate before becoming unwell. I thought that was super fun and enjoyed chatting with him, my supervisor at the time felt the patient was a know-it-all

My food/activity/symptom journal goes back to 2001. It's definitely changed in details since then. I admit that I do leave out details that I probably should keep, but overall, it's been very useful, revealing correlations I probably otherwise wouldn't have noticed. I think it also helps me stay aware of what is in those food items. My journal is on paper. I keep a clipboard next to my usual dining spot, with three colours of pens ready. People with the latest in personal electronics might be happier using that media. People with severe ME might have problems with any method, although if they are your most desired subjects, a camera (or several) might allow someone else to collect/process the data.

That's quite comprehensive! For research it would be easiest if I could get the data from a digital survey of sorts, and not have to go through making it digital myself (though that would give a a reason to use that machine learning course I took, handwriting would be one of the use-cases it should perform well at... hm). For severe ME I'd hope a carer could answer.

Food frequency surveys will probably be useless. The list of foods will either be too limited or too long for people to put up with, and you get those memory problems and decisions of whether to be completely honest (guilty about junk food, etc).

I agree, they are very limited, but oh-so used due to their simplicity.

The recall options seem like more effort for less quality than keeping immediate personal records.

My suggestion: offer some formats for paper records (maybe print a convenient to carry pad) and some options for electronic devices ( a simple app?). Allowing freeform records would require too much effort for whomever has to input that data for whatever uses you plan. My scribbles and shorthand wouldn't make sense to anyone else. For that matter, my early records are probably undecipherable by me now. BTW, it's disturbing how grimy those old pages get, from hand grease, graphite/ink spreading, etc.

I've been thinking about having multiple text input fields where one could fill in meals, but you'd have to be able to close it and come back to it. The one thing I really like about the digital 24 hour recalls are they often include images of portion sizes for different foods, which can be useful, and as mentioned prompts for food/drink that is often forgotten.

One option for those with brain fog and who have trouble remembering what they have eaten each day might be to suggest they photograph each plate/bowl of food on their phone to use as an aid to remembering when they fill in their record for the day.
They would, of course, have to remember to take the photos.

It's a good idea The brain fog bit is frustrating, I used to forget if I had eaten anything, which could end in both eating too much or too little depending on the day.. there were tricks such as looking for dirty dishes or food waste in the garbage bin, but only if my foggy brain could remember to actually do that..

Edit to add. I remember hearing about people agreeing to be filmed during a meal, or maybe it was for a day, and what they actually ate being compared with what they remembered eating. They ate a lot more than they remembered.

I know some have the rule of thumb that they add 10% energy to a calculated intake due to presumed underreporting (for whatever reason, either conscious or not).

For a survey I'd be interested in more than energy though, such as variety of foods eaten, if anything is avoided/excluded, micronutrient intake, ability to shop/prepare/cook onesself, oral/GI symptoms that could influence food intake, how PEM influences food intake (if at all), if eating can cause PEM and if one has been screened for risk of malnutrition and/or received any help. Well, on the top of my head, details would have to be ironed out

Symptoms of ME, especially when severity is moderate or worse, can easily put pwME at risk of malnutrition and it would be nice to get some numbers on it.

 

[Trish]

I would have a problem of doing a food diary because by necessity I have to rely a lot on frozen ready meals and tinned foods, which inevitably have long lists of ingredients. It would be easiest for me to just submit the packaging for those meals.

 

[Midnattsol]

I would have a problem of doing a food diary because by necessity I have to rely a lot on frozen ready meals and tinned foods, which inevitably have long lists of ingredients. It would be easiest for me to just submit the packaging for those meals.

That is a problem, but with the packaging it is possible to get a semi-reliant estimate from looking at recipes for a similar meal and compare the recipes nutrient content with the nutrient content on the packaging. Food composition datatables are also increasingly adding ready meals, so sometimes it is possible to get the nutrient content of a specific product too.

 

[shak8]

I was or still am a participant in the Harvard Nurses Health Study and we had a dietary intake questionnaire for several years (I questioned its accuracy by recall of the participant to the researchers and they assured me it was "valid.")

They might give you some info on setting yours up. https://www.hsph.harvard.edu/nutritionsource/nurses-health-study/

 

[Midnattsol]

Thanks @shak8

 

[Creekside]

I'd like to include a question about foods that are avoided (or foods that have previously been excluded from the diet for some reason) and/or cause some sort of symptom aggrevation. But at the same time asking about everything could be a lot.

Yes, that would require a lot of effort for some people. To do it properly I'd have to go back through all my records. I kept meaning to maintain a list of foods I reacted to, but never got around to it. After all, it's so clear at the time, we'll never forget it, right? At present, I look around a typical grocery store, see all the variety of foods, and realize that I simply have to avoid most of them. I don't even look at the produce section anymore.

For a survey I'd be interested in more than energy though, such as variety of foods eaten, if anything is avoided/excluded, micronutrient intake, ability to shop/prepare/cook onesself, oral/GI symptoms that could influence food intake, how PEM influences food intake (if at all), if eating can cause PEM and if one has been screened for risk of malnutrition and/or received any help.

That would really be a lot of work. Add in that food sensitivities changes over time, so diets, nutrient intake, etc, changes with that.

I found that I seemed to be insensitive to nutrient intake, except for a few instances where I had bad reactions. I spent around a year on basically cornstarch and water (trying to let my immune system reset; didn't work) and aside from noticing sore gums if I didn't take a Vit C tablet often enough, I didn't notice any signs of dietary deficiencies. That really made me skeptical of RDAs for nutrients. From my experience, I think the human body can store many nutrients for a long time, and adapt to low intakes.

Something else you could add to your survey would be questions about cravings. I can't recall having any unusual cravings, but maybe it is an issue for some other PWME.

Yet another thing to include in your survey: fibre content. Some people might not consider that important, but it affects the microbiome, and it affects some nutrients. A few months ago I developed a sensitivity to dietary fibre. It now makes my ME symptoms worse, so I have to avoid it, which really restricts my diet, which used to be fibre-rich. My guess is that it's the propionic acid produced from fibre, but I haven't come up with an experiment to test that.

 

[Amw66]

My daughter takes photos on her phone of everything she eats to track responses etc. As she can forget if she has even eaten a meal a couple of hours afterwards it's the only thing we have found works.
There is no memory to rely on.

As we use the same 2 or 3 plates/ bowls it's easier to see portion size on the photos.

As some reactions seem to be dose dependent ( carbs in particular) the photos are quite good for gauging things