New Zealand Health Survey - opportunity to include ME/CFS questions

R

RoseE

Senior Member (Voting Rights)
Copied from the News from New Zealand and the Pacific Islands

Just came across the NZ Health Survey.
https://www.health.govt.nz/nz-healt...and-surveys/surveys/new-zealand-health-survey

It looks like it could be a vehicle for getting prevalence figures of ME and CFS in NZ. Would have to advocate for a question to be included in the rotating module (not core) question set I expect.

The current guidelines for topics are defined here...
https://www.health.govt.nz/system/f...bjectives-and-topic-areas-aug09-nov2010_0.pdf

Current Stakeholders (users?) of the Survey have been asked for feedback by 24th July for both the Child and Adult survey. Not sure if the current consultation process is something that ME Awareness NZ can submit on. But we will investigate and try to do so.
https://consult.health.govt.nz/health-survey/adult-nzhs-feedback/
https://consult.health.govt.nz/health-survey/child-nzhs-feedback/
 
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I've set up this new thread as I think members of the forum can help with information to make a good case for questions on ME/CFS to be included in the survey.

Here's some preliminary thoughts for what they are worth

From the Methodology Report:

The NZHS collects information that cannot be obtained more effectively or efficiently through other means, such as by analyses of hospital administrative records, disease registries or epidemiological research. The NZHS is the best source of information at a population level for most of the topics it covers.
Click to expand...

The incidence of ME/CFS can not easily be accurately determined from hospital administrative records. It is likely that the majority of people with ME/CFS are undiagnosed (there are international references on that - they probably have a 'stab in the dark' basis, but still). Not all people with ME/CFS are assessed in hospital outpatient clinics. There are a range of diagnostic labels in different parts of the medical system as well as in different health boards which confuses the situation.

There is no ME/CFS registry in New Zealand (what about elsewhere?). There has been no epidemiological research in New Zealand (?) and research undertaken elsewhere in the world sparse and mostly problematic. Epidemiological research on ME/CFS is difficult, partly due to the relatively low estimated incidence of around 0.4%; very large numbers of people have to be surveyed.

The United States has acknowledged that large scale surveys are needed to help quantify the burden of illness attributable to ME/CFS. It has recently added questions on ME/CFS to its national health census??? (I forget the actual name of the survey - it's been discussed here. @Medfeb. This is an important point to make I think, that the US has recently decided that it's an important enough and real problem to include in this influential survey. Does anyone have any information on what questions have been included?)

Australia has recently committed to (I forget what exactly, but some determination of the impact of ME/CFS on the economy?). (Also an important point to make I think, increases the credibility of the disease).

Better information about the incidence of ME/CFS could help make the case for an ME/CFS registry. This is needed to start to provide well-based information about prognosis, as well as the frequency of mis-diagnosis. Limited evidence suggests that a significant proportion of people diagnosed with ME/CFS are eventually diagnosed with other diseases, such as MS.

Rose, perhaps our contact in our local District Health Board contact could review and support a submission to the NZ Health Survey? I know he had some thoughts about the problems with epidemiology based on data from medical records. Perhaps if the NZ Health Survey were contacted to let them know a submission was coming, they would give an extra week? The proposed questions will need some thought, as it's very hard not to just measure 'chronic fatigue'.

Let me know if I can help with this.
 
@Hutan - The survey is the Behavioral Risk Factor Surveillance System (BRFSS). According to the CDC, it is the US's "premier system of health-related telephone surveys that collect state data about U.S. residents regarding their health-related risk behaviors, chronic health conditions, and use of preventive services."

CDC added two optional questions on "CFS" a few years ago but its up to the states on whether they implement them. CDC did not provide any money to do that.

Paraphrased, the two optional questions are:
Has any medical provider ever diagnosed you with CFS?
Do you still have CFS?

When CDC piloted the questions in 2014 in a few states, they found a lifetime prevalence of 1.6% and a current prevalence of 1.2%. Three times the Jason prevalence estimate and implies a recovery of 25% is much higher than reported in other sources. CDC justified the higher numbers by noting they were similar to another survey from Canada but if I understand, that survey was also inflated.

One perspective is that getting these questions into the survey will raise awareness and build support for a stronger national response to this disease. But in the US medical system - as probably elsewhere - CFS has historically - and is still - used as a wastebin diagnosis and many patients with ME are not diagnosed. IMO, the specific questions added to the BRFSS risk generating erroneous prevalence estimates and fostering false associations with behaviors and risk factors that have nothing to do with ME.

Its possible that different questions would pose less of a problem

One other note... CDC may see BRFSS as its answer to the need for proper epidemiological studies using appropriate methods and properly defined cohorts. But its not and we are pushing for proper epi studies.

Edited to note - I think the BRFSS questions use the term "CFS" but would have to confirm
 
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Thanks so much for the information and your thoughts @Medfeb. Yes, there's a lot wrong with that pair of questions in the BRFSS.

It's hard to know how to make sure that there is a net benefit from the inclusion of questions on ME/CFS in the NZ Health Survey in the absence of a definitive biomarker for diagnosis.
 
Hutan said:
Australia has recently committed to (I forget what exactly, but some determination of the impact of ME/CFS on the economy?). (Also an important point to make I think, increases the credibility of the disease).
Click to expand...
@Simone - you might know?
Hutan said:
The proposed questions will need some thought, as it's very hard not to just measure 'chronic fatigue'.
Click to expand...
How about a second question about diagnostic criteria used:
Question 1: Have you ever been diagnosed with ME or CFS?
Question 2: Was the diagnosis made based on [choice of] ICC, CCC, Fukuda, etc. or Don't know.

Not that that would resolve the question of the undiagnosed. The only option there I can see is to send people to the Solve ME/CFS (I think it was) quiz and report their results. Almost certain that wouldn't be acceptable to the creators of the NZ Health Survey but always worth a try.
 
Ravn said:
How about a second question about diagnostic criteria used:
Question 1: Have you ever been diagnosed with ME or CFS?
Question 2: Was the diagnosis made based on [choice of] ICC, CCC, Fukuda, etc. or Don't know.
Click to expand...
Might be good to get a question about PEM in there?

Just found the info about who is surveyed and how on the site where the data is accessible - as I was unsure who fills the Surveys out, thought it might be the doctors. Turns out that people were interviewed in their homes.
https://minhealthnz.shinyapps.io/nz...11ceee/_w_8a4f8318/_w_7aa52694/#!/methodology

Seems like there is a bit of time for the survey interview, so perhaps the Solve ME/CFS questionaire is a valid thing to suggest.
 
Been skimming through the 2017/2018 adult questionnaire to see what's been done in the past (download here: https://www.health.govt.nz/publicat...ntent-guide-2017-18-new-zealand-health-survey). Unable to read much at the moment but did notice this:

There are several questions about hurdles to accessing healthcare, including dental, such as cost, transport, childcare problems etc. but I didn't see anything relating to being too ill to travel and unable to get home visits. That should surely be included and would also affect people with other conditions I expect.

A more basic question: How many people are interviewed each year? Enough to give a statistically sound result for a relatively rare condition (the others they ask for are very common)? If not it probably wouldn't be a good idea to try to use this particular survey to get data on ME numbers because you wouldn't get any sensible results. The survey could still be useful for more general questions like the one about difficulties accessing health care.
 
Re sample size:
The Methodology said:
The NZHS has a multi-stage, stratified, probability-proportional-to-size (PPS) sampling design. The survey is designed to yield an annual sample size of approximately 14,000 adults and 5,000 children.
Click to expand...

It's probably a bit on the small size. I really like the idea of asking more general questions like the one about difficulties accessing health care for reasons other than cost.

For the 2017/18 year, the eight Tier 1 statistics from the NZHS are: smoking (current), past-year (alcohol) drinking, hazardous (alcohol) drinking, obesity, unmet need for a general practitioner (GP) due to cost, unfilled prescription due to cost, self-rated health and mental health status (psychological distress).
Click to expand...
 
Ravn said:
A more basic question: How many people are interviewed each year? Enough to give a statistically sound result for a relatively rare condition (the others they ask for are very common)? If not it probably wouldn't be a good idea to try to use this particular survey to get data on ME numbers because you wouldn't get any sensible results. The survey could still be useful for more general questions like the one about difficulties accessing health care.
Click to expand...
Hutan said:
It's probably a bit on the small size. I really like the idea of asking more general questions like the one about difficulties accessing health care for reasons other than cost.
Click to expand...

So just wondering... what size survey do we believe would be needed given the NZ population of 4,794,436?
 
Hutan said:
Australia has recently committed to (I forget what exactly, but some determination of the impact of ME/CFS on the economy?). (Also an important point to make I think, increases the credibility of the disease).
Click to expand...

Yes, Australia committed to funding a health economics study of ME/CFS. Hopefully we shall have an announcement of the successful application soon, which will give you more specifics which you can use.
 
RoseE said:
So just wondering... what size survey do we believe would be needed given the NZ population of 4,794,436?
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I don't think the population size matters much here. More a question of how many people you need to be able to establish if we're 1/1000 or 4/1000. If the adult survey covers 14000 responses we'd only expect to get between 14 and 56 PwME at those rates and I'm not sure how sound that would be, especially with the diagnosis issues.

Who are the statisticians here? Does anyone know and can tag them? Thanks.
 
Apologies in advance, my mind isn’t all there but submission date is pressing so here goes. I definitely would like the survey to somehow target ME specifically. I think the Solve ME survey does a good job if it could be somehow considered as a basis.
Could we also expand the pool a little by also encouraging the survey to capture all difficult to diagnose conditions? Something along the lines of, “Have you had or do you have a life-altering condition your primary carer has been unable to definitively diagnose?”

Ravn said:
How about a second question about diagnostic criteria used:
Question 1: Have you ever been diagnosed with ME or CFS?
Question 2: Was the diagnosis made based on [choice of] ICC, CCC, Fukuda, etc. or Don't know
Click to expand...

Lol and include an appendix listing each for reference. Brilliant! That alone will start some conversation! Perhaps even include as one of the options “unexplained fatigue without experiencing many of the other symptoms required by the CCC or ICC” .
 
Just fyi I plan to make a submission today, probably go with something like...
theJOYdecision said:
“Have you had or do you have a life-altering condition your primary carer has been unable to definitively diagnose?”
Click to expand...
given the small sample size, but will also raise in a letter that we are drafting to the Minister of Health. Who knows. Might get some support from that angle.
Thanks everyone for your input.
My apologies for the very short notice.
 
Ravn said:
I don't think the population size matters much here. More a question of how many people you need to be able to establish if we're 1/1000 or 4/1000. If the adult survey covers 14000 responses we'd only expect to get between 14 and 56 PwME at those rates and I'm not sure how sound that would be, especially with the diagnosis issues.

Who are the statisticians here? Does anyone know and can tag them? Thanks.
Click to expand...

The question should be around sampling methods. If for example, you were to sample people as they came out of the supermarket then that would introduce a huge bias as those with fatigue are unlikely to spend the additional time to talk to someone.

So how they decide on getting a representative sample from the population becomes important - is it simply age and socioeconomic groups. Also how they ask the questions; poorer people (and young people who move a lot) may not be on the phone (or in the phone book) so a phone survey is biased - same with the internet.

I don't know much about sampling calculations but I assume you make some assumptions and then calculate the required size of the group to get a desired level of error bar. I suspect @Lucibee knows more about this area.
 
Adrian said:
The question should be around sampling methods. If for example, you were to sample people as they came out of the supermarket then that would introduce a huge bias as those with fatigue are unlikely to spend the additional time to talk to someone.

So how they decide on getting a representative sample from the population becomes important - is it simply age and socioeconomic groups. Also how they ask the questions; poorer people (and young people who move a lot) may not be on the phone (or in the phone book) so a phone survey is biased - same with the internet.
Click to expand...
I don't know how they select their samples but it seems they do an in-person interview. Whether that means they go to people's homes - which would be the ideal - I do not know (the information may well be there somewhere, but it was too much to read for me).

If we assume perfect conditions - they select a good representative sample and interview people in their homes and ask good questions about PEM - would 14000 be enough for a sound result on ME prevalence? Or 5000 for children?
 
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Ravn said:
Was the diagnosis made based on [choice of] ICC, CCC, Fukuda, etc. or Don't know.
Click to expand...
From what I can see over here in the UK, specialists do not use any specific criteria (or if they do, they don't say so), but simply tell a patient that they have ME/CFS.

Ravn said:
If the adult survey covers 14000 responses we'd only expect to get between 14 and 56 PwME at those rates and I'm not sure how sound that would be, especially with the diagnosis issues.
Click to expand...
If the probability was 1 in 1000, and you sampled 14000, there's only a 10% chance of getting more than 18 instead of the 14 you would expect: there's not much chance of confusing it with 4 in 1000. I know that isn't quite what you asked, but it's the easiest to calculate to show that 14000 would be a reasonable size.

There's going to be a far, far greater error due to poor diagnoses, and as such, I'm not sure it is worth doing. Until the diagnosis process is clear, what you are really finding out is how many people have the label rather than the illness.
 
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