The PACE trial [pro]: It’s time to broaden perceptions and move on. Keith Petrie, John Weinman

[TiredSam]

Illness beliefs can definitely impact on outcomes in diabetes as treatment requires a high degree of input and self-management from the patient.

ok so when we get a course of injections or pills to manage ME we can say that people's beliefs and behaviours about taking their pills or injections affects their illness outcomes. Until then can we just get on with making the pills?

 

[lilpink]

Unfortunately it is often not about whether it works, just about whether the spin "doctors" ( ha! ) succeed.

Aye. Where's that pesky 'irony' emoticon when you need it?

 

[Valentijn]

Illness beliefs can definitely impact on outcomes in diabetes as treatment requires a high degree of input and self-management from the patient. I have a relative with insulin dependent diabetes who takes a very passive outlook and has what psychologists would call an "external locus of control" ie. he thinks that doctors know best and will tell him what to do etc.

Much of it has nothing to do with perceptions or beliefs, and everything to do with the information they are given, and following instructions. In the UK and Netherlands there is currently a push for Type 2 diabetics to never self-test. This is done to save the government some money, but it takes control out of the patients' hands, and requires them to blindly follow instructions and hope everything works out.

It happens to a lesser extent even with Type 1 diabetics, when their prescription for testing strips is insufficient, or the costs for testing strips aren't covered at all. When the doctor or medical system is creating this attitude in patients, the patients aren't the ones to blame for it, and it obviously is not coming from an internal source.

And the information given to patients regarding self-management is also grossly insufficient, and even likely to be harmful. People are going to listen to their doctor when he says they should eat at least 130 or 160 or 200 carbs per day. Their outcome is going to suffer, especially if they follow the doctor's instructions not to self-test blood glucose, and never see the direct and immediate impact that food is having.

The patients listening to these doctors will have very poor outcomes. Their blood sugar will stay high, it will peak excessively, and it will cause long-term vascular damage. By the time the doctor realizes telling the patients to eat healthy (with lots of carbs) and exercise a bit isn't sufficient, a year or more will probably have passed, and damage is done. The diabetes patient is demoralized, because the doctor's advice hasn't worked, and the doctor usually blames the patient for presumed non-compliance.

If the doctor isn't particularly negligent, the patient will probably be put on insulin at some point, with complex adjustments to be made and new risks (death). If the patient isn't taught how to calculate and adjust dosages (my Type 1 fiance hasn't been), they're still pretty much flying blind and either lowering insulin to avoid going hypo, and going hyper at times as a result, or eating sugar tablets on a daily basis, which isn't going to help with weight control.

This has nothing to do with illness beliefs, and everything to do with piss-poor management from doctors.

 

[A.B.]

Are "negative illness beliefs" a consequence or cause of increased mortality? To see where Weinman et. al. want to go with this, one only needs to read this paragraph. Yes they are careful to avoid making the claim but one can tell that they would like to.

Our data clearly do not allow us to delineate precisely why patients who believe their ulcers are associated with greater symptoms might experience a faster time to death. But it may be possible to speculate to possible pathways based on the relationship between identity beliefs and the other belief domains. In particular, significant positive associations were evident between identity beliefs and consequence, timeline and emotional response beliefs; as well as a significant negative correlation with personal control beliefs. Thus, patients who perceived their ulcers were associated with greater symptoms also believed that their ulcers had more serious consequences for them, would last a long time, that they were associated with greater emotional distress and less personal control. This constellation of beliefs may have led to unhelpful behavioural and/or emotional responses (e.g., poorer adherence to treatment) leading to the observed association with mortality.

Only ischemia and identity beliefs correlated with mortality. Those other belief domains the authors refer didn't achieve a statistically significant correlation. So this is a bit like proposing a hypothesis that is already known to be unlikely.

You can see what "identity beliefs" are in the context of diabetes by visiting The Illness Perception Questionnaire website: http://www.uib.no/ipq/pdf/IPQ-R-Diabetes.pdf The identity component of the questionnaire is under the "Your views on diabetes" header, and asks patients whether they have experienced symptom x (such as pain, nausea, fatigue, dizziness) and whether they think symptom x is related to their diabetes.

I'm not sure how they scored that one (there's the possibility conflating actual symptoms with beliefs depending on scoring method), but would anyone be surprised if the number of symptoms a patient experiences generally reflects their risk of death?

In more general terms, these psychosomatic studies are all the same in the sense that they don't properly consider alternative explanations. They're about promoting a certain view, not about finding the most effective way to help patients.

Does anyone here believe that changing patient beliefs in say 6 therapist sessions would yield better results than say "diabetes management classes" that teach patients how to effectively manage their condition in the same amount of time (perhaps even for less money)?

 

[Snowdrop]

As a T1 diabetic I agree with you. Illness beliefs can definitely impact on outcomes in diabetes as treatment requires a high degree of input and self-management from the patient. I have a relative with insulin dependent diabetes who takes a very passive outlook and has what psychologists would call an "external locus of control" ie. he thinks that doctors know best and will tell him what to do etc. His blood sugars are often out of control and he has developed complications. In reality doctors aren't able to treat diabetes - it's patients who have to make the complex dosing decisions all day every day.

In contrast another relative has a very proactive approach with a strongly "internal locus of control". He proactively manages his diabetes, insulin, diet and exercise and has near-normal blood sugar levels with no complications.

Agree with the analysis of different personality types vis a vis how they interact with the world. But I would not term either way of operating as illness beliefs. The operational style is larger than the specific issue.

ETA: I hadn't read what Valentijn said about medical information provided. That would indeed make a difference too.

 

[JaimeS]

There is an article that practically quotes a good deal of this thread!

http://journals.sagepub.com/doi/full/10.1177/1359105317712523

 

[Snow Leopard]

"Parade of horribles"

 

[Barry53]

As a professor of law, Steve Lubet really does have an excellent way of presenting the logical fallacies that abound within these 'papers'. A very useful part of the body of evidence that is building.