Do labels matter? Implications of ongoing symptomatic chronic illnesses labeled as conventional diagnoses vs. functional somatic syndromes 2023 Smith

Objective
A consideration of chronic illness according to illness labels that are medically understood as opposed to being outside of medical understanding may reveal unique differences in how individuals understand their illness and how such lay understandings relate to health-related quality of life. Study aims are framed according to the commonsense model of self-regulation with a focus on characterizing illness representations according to chronic illness diagnosis type.

Methods
Individuals suffering from symptomatic chronic illnesses (n  =  192) completed measures of illness representations, coping, and general health. Participants were categorized into one of two groups based on reported diagnosis/symptoms: (a) conventional diagnosis (CD) or (b) functional somatic syndrome (FSS).

Results
FSS participants reported lower illness coherence and greater illness identity than CD participants. Overall, illness coherence predicted negative coping which mediated the relationship between illness coherence and general health.

Conclusions
Minimal differences were found in illness representations across FSS and CD groups with distinctions found only for illness coherence and identity. Illness coherence stands out as particularly important for coping and health-related quality of life for individuals with ongoing symptoms. Healthcare professionals should work carefully with chronically ill populations to address potential impacts of illness coherence, especially among FSS patients.

Paywall, https://journals.sagepub.com/doi/10.1177/17423953231174926

 

Illness coherence seems to be a term developed out of the ideas of Antonovsky (Health, Stress and Coping) - explanation of which : The Sense of Coherence in the Salutogenic Model of Health and formalised in the Illness Perception Questionaire (IPQ-R) to which Moss-Morris has been a contributor: The Revised Illness Perception Questionnaire (IPQ-R) and further conceptually developed as "The common sense model of illness self-regulation" A conceptual review and proposed extended model

Reference list for the Smith paper:

References
1. Bernell S, Howard SW. Use your words carefully: what is a chronic disease? Front Public Health 2016; 4:–159.
2. Stone J, Carson A, Sharpe M. Functional symptoms and signs in neurology: assessment and diagnosis. J Neurol Neurosurg Psychiatry 2005; 76: i2–i12.
3. McAndrew L, Crede M, Maestro K, et al. Using the common-sense model to understand health outcomes for medically unexplained symptoms: a meta-analysis. Health Psychol Rev 2019; 13: 427–446.
4. Moss-Morris R, Wrapson W. Representational beliefs about functional somatic syndromes. In: Cameron LD, Leventhal H (eds) The self-regulation of health and illness behavior. New York: Routledge, 2003, pp.119–137.
5. Baken DM, Harvey ST, Bimler DL,. et al. Stigma in myalgic encephalomyelitis and its association with functioning. Fatigue: Biomedicine, Health & Behavior 2018; 6: 30–40.
6. Eikelboom EM, Tak LM, Roest AM,. et al. A systematic review and meta-analysis of the percentage of revised diagnoses in functional somatic symptoms. J Psychosom Res 2016; 88: 60–67.
7. Leventhal H, Meyer D, Nerenz D. The common sense representation of illness danger. In: Rachman S (eds) Contributions to medical psychology. Oxford (UK): Pergamon Press, 1980, pp.7–30.
8. Leventhal H, Nerenz D, Steele D. Illness representations and coping with health threats. In: Baum A, Taylor SE, Singer JE (eds) Handbook of psychology and health. New Jersey: American Psychological Association, 1984, pp.217–247.
9. Leventhal H, Phillips L, Burns E. The common-sense model of self-regulation (CSM): a dynamic framework for understanding illness self-management. J Behav Med 2016; 39: 935–946.
10. Groarke A, Curtis R, Coughlan R, et al. The impact of illness representations and disease activity on adjustment in women with rheumatoid arthritis: a longitudinal study. Psychol Health 2005; 20: 597–613.
11. Hagger M, Koch S, Chatzisarantis N, et al. The common sense model of self-regulation: meta-analysis and test of a process model. Psychol Bull 2017; 143: 1117–1154.
12. Lange L, Piette J. Perceived health status and perceived diabetes control: psychological indicators and accuracy. J Psychosom Res 2003; 58: 129–137.13. Lange L, Piette J. Personal models for diabetes in context and patients’ health status. J Behav Med 2006; 29: 239–253.
14. Petrie K, Weinman J, Sharpe N, et al. Role of patients’ view of their illness in predicting return to work and functioning after myocardial infarction: longitudinal study. Br Med J 1996; 312: 1191–1194.
15. Rutter C, Rutter D. Longitudinal analysis of the illness representation model in patients with irritable bowel syndrome (IBS). J Health Psychol 2007; 12: 141–148.
16. Hill E, Frost A. Illness perceptions, coping, and health-related quality of life among individuals experiencing chronic Lyme disease. Chronic Illn 2022; 4: 426–438.
17. Weinman J, Petrie K, Moss-Morris R, et al. The illness perception questionnaire: a new method for assessing the cognitive representation of illness. Psychol Health 1996; 11: 431–445.
18. Robbins J, Kirmayer L, Kapusta M. Illness worry and disability in fibromyalgia syndrome. Int J Psychiatry Med 1990; 20: 49–63.
19. Dischinger MT, Lange LJ, Behling S. Loss of resources and demoralization in the chronically ill. Gen Hosp Psychiatry 2019; 61: 10–15.
20. Moss-Morris R, Weinman J, Petrie K, et al. The revised illness perception questionnaire (IPQ-R). Psychol Health 2002; 17: 1–16.
21. Kroenke K, Spitzer R, Williams J. The PHQ-15: validity of a new measure for evaluating the severity of somatic symptoms. Psychosom Med 2002; 64: 258–266.
22. Rief W, Hiller W. A new approach to the assessment of the treatment effects of somatoform disorders. Psychosomatics 2003; 44: 492–498.
23. Carver C. You want to measure coping but your protocol’s too long: consider the brief COPE. Int J Behav Med 1997; 4: 92–100.
24. Hays R, Morales L. The RAND-36 measure of health-related quality of life. Ann Med 2001; 33: 350–357.
25. Ware J. SF-36 Health survey update. Spine 2000; 25: 3130–3139.
26. Hayes A. Introduction to mediation, moderation, and conditional process analysis: A regression-based approach (methodology in the social sciences). 2nd ed. New York: The Guilford Press, 2018.
27. Hays R, Shapiro M. An overview of generic health-related measures for HIV research. Qual Life Res 1992; 1: 91–97.
28. Stewart A, Sherbourne C, Hays R, et al. Summary and discussion of MOS measures. In: Stewart AL, Ware JE (eds) Measuring functioning and well-being: the medical outcomes study approach. North Carolina: Duke University Press, 1992, pp.173–181.
29. Creed F, Guthrie E, Fink P, et al. Is there a better term than “medically unexplained symptoms”? J Psychosom Res 2010; 68: 5–8.
30. Burton C, Fink P, Henningsen P, Löwe B, Rief W, on behalf of the EURONET-SOMA Group. Functional somatic disorders: discussion paper for a new common classification for research and clinical use. BMC Med 2020; 18:
31. Arnold LM, Choy E, Clauw DJ, et al. Fibromyalgia and chronic pain syndromes. Clin J Pain 2016; 32: 737–746

 

True, need more info. Also given the investigators are the ones who categorised indeed who knows what is in the FSS group.

I highly doubt that the label is anymore that one tiny factor in explaining any differences in the measures they have used given the vast differences we know about whether non-diagnoses, employment, medical, financial, social support and deliberate constructed outcast status and harmful therapies that act as conversion courses could be involved for those.

Someone going to the media for decades suggesting all those with x are trolls who lie in bed all day and should be bullied with y unpleasant and untrue phrase meaning that individuals get that thrown at them as a contemptuous attitude day in day out because everyone around them has at least been given permission if not encouraged or been told to is going to account for a lot more of a shock in 'coping' - given noone could ever predict they'd face such dystopian bile 'in the name of mental health' (the 2 most important aspect scientifically for which as protective and helping factors have always been confirmed as: support network and situational ie not being bullied and having others help sort functional matters, NOT the opposite way around which this 'new system' of mental health in name only seemingly targetedly attacked to dismantle in its changes over the last decade) - than whatever little non-things they've put in their survey I imagine.

So maybe it is correct to be done as a 'see what the whole bigotry of the system does' as a retitle, rather than any delusion the author has been given that it is either about labels individuals might have themselves or any internal factors to do with them. It will be describing who has been selected out by a system for nasty treatment and what it does to them surely? Not about 'coping' and not 'down to the individual' but about deliberate, concerted destruction of the self - which have been done explicityl because noone would survive it and escalated to ensure should they do it is made worse - based on presumptions and labels for no reason by others. And I guess therefore the what goes with the name 'in the system' is 'what's in a label'.

Lets not make the victims of other's antisocial behaviour or unkindness (if I have to say it might be misguided or inadvertent but I do often feel it doesn't take much empathy if you are in a positin where your eyes should be open to what you do) take the blame for the intended consequences of it. Or for the industry to get away with rewriting such terrible actions as anything other than it is, what it causes to humans shouldn't be a surprise and if it is then the problem is with the person pretending they are surprised by it. Perhaps it shoudl be a psychological condition, but it isn't the patients and I suspect there is a vast constructed 'group psychology' pushing of it aspect. Now that would have been interesting to see.

Of course they always ensure such labels are demeaning, derogatory and encourage more of the don't listen to them, but that is because they aren't intended for medical good or purposes just to achieve agendas and power differentials. So why wouldn't those who are effectively identified as 'targeted' by these things be apparently according to their term 'coping less well' according to mine 'more harmed due to removal of support and targeting with unkindness' - it is like a bunch of people who smashed up their toys writing a manifesto as to why it was the toys fault they've got broken toys as they must have been defective.

So in a way it doesn't matter what the details are in that survey I doubt they are relevant or even rational to the real differences of experiences of those 'selected out for special treatment' and certainly not the 'why' or 'mediating factors', it simply provides proof that their doing it and focusing on it in the first place - which goes on way before they got to this researcher who I assume is following the same behind closed doors heuristics given for doing so - leads to behaviours and situations that are immensely harmful?

 

Or they could also not do any of that useless mumbo-jumbo and instead do their actual job, if someone could somehow figure out how to hold people accountable and motivate the people wasting public resources on junk like this. Or just kick them out entirely for being useless. Should be an easy choice, but one requires actual work so I guess it's off limits.

 

Yep. If it was in the common sense, does what it says in the tin language and method ecpected if business literature this one would surely be:

do the people the medical profession single out and chuck under these horrible buckets fir bad treatment suffer more? Yes

does it lead to really bad outcomes vs not doing that? Yes

what is it that after labelling into these buckets that ideology then levels at these people to cause harm and take things away from them vs what those who aren’t put into those buckets get levelled at them?

OK maybe we can conclude that ‘the label is just the name of what this system does to those chosen unlucky individuals as a pathway for outcast status’ and the ‘outcome’ is as they intended/THEIR responsibility. So looking for pretend internal factors is just denial. How much are those who make their money in some way from ‘people like this’ having spent on what they do because yes clearly it isn’t going to those who are accountable for anything other than focusing on why they deserve that treatment as PR and if they got worse from it maybe they are losers rather than the whole thing being transparently harmful to anyone.

It would be unethical of course to take a load of people with cancer and heart disease and chuck them into the dystopia with a label telling them what they have isn’t true and here’s your new world where we control what others think of you and how poorly you get treated just to watch the same destruction bit by but occur. You could probably do it enough with well people by labelling them enough and rumour spreading with forced appointments some of them would lose their jobs and support networks and access to functional things everyone accesses normally to replicate that ‘added disability’ but what would the drop out rate and ethics be of that too. And they’d probably be left never escaping that label once damaged so their ‘I was well before all this’ claim would be rewritten.

 

Link for ref for IPQ-R (#20 in CRG's list above) is: The Revised Illness Perception Questionnaire IPQ-R (Moss-Morris et al, 2010, Psychology and Health)

 

Did they manage to make the assessment’blind’ without ‘face fits’ demographic info? That is often there in abstracts on these ‘new confitions’ to help front line staff know how many and what type of people they should be on the look out for.

 

In case we don't have the IPQ-R, here are the questions they evaluated in the above ref (many read as a rating of the illness itself and medical capability/competence, rather than anything to do with the patient) —

Spoiler: IPQ-R (italicised = revised qns)

Timeline acute/chronic
My illness will last a short time
My illness is likely to be permanent rather than temporary
My illness will last for a long time
This illness will pass quickly
I expect to have this illness for the rest of my life
My illness will improve in time

Timeline cyclical
The symptoms of my illness change a great deal from day to day
My symptoms come and go in cycles
My illness is very unpredictable
I go through cycles in which my illness gets better and worse

Consequences
My illness is a serious condition
My illness has major consequences on my life
My illness does not have much effect on my life
My illness strongly affects the way others see me
My illness has serious financial consequences
My illness causes difficulties for those who are close to me

Personal control
There is a lot which I can do to control my symptoms
What I do can determine whether my illness gets better or worse
The course of my illness depends on me
Nothing I do will affect my illness
I have the power to influence my illness
My actions will have no affect on the outcome of my illness

Treatment control
There is very little that can be done to improve my illness
My treatment will be effective in curing my illness
The negative effects of my illness can be prevented (avoided) by my treatment
My treatment can control my illness
There is nothing which can help my condition

Illness Coherence
The symptoms of my condition are puzzling to me
My illness is a mystery to me
I don't understand my illness
My illness doesn't make any sense to me
I have a clear picture or understanding of my condition

Emotional representations
I get depressed when I think about my illness
When I think about my illness I get upset
My illness makes me feel angry
My illness does not worry me
Having this illness makes me feel anxious
My illness makes me feel afraid

 

Hope this answers —