"Functional limitations in functional somatic syndromes and well-defined medical diseases" Joustra

[Dolphin]

Journal of Psychosomatic Research
Volume 79, Issue 2, August 2015, Pages 94–99

Functional limitations in functional somatic syndromes and well-defined medical diseases. Results from the general population cohort LifeLines

• Monica L. Joustraa,
• Karin A.M. Janssensa, , ,
• Ute Bültmannb,
• Judith G.M. Rosmalena

Highlights

•
QoL was lower in each patient group than in controls.

•
All patient groups were restricted in work participation.

•
Functional limitations in FSS patients were as severe as those in patients with MD.

•
FSS have not only individual, but also societal consequences.



Abstract
Objective
Functional somatic syndromes (FSS), defined as physical syndromes without known underlying organic pathology, are sometimes regarded as less serious conditions than well-defined medical diseases (MD). The aims of this study were to evaluate functional limitations in FSS, and to compare the results to MD patients with the same core symptoms.

Methods
This study was performed in 89,585 participants (age: 44.4±12.4 years, 58.5% female) of the general-population cohort LifeLines. Quality of Life (QoL) and work participation were examined as indicators of functional limitations. QoL was assessed with two summary scales of the RAND-36: the physical component summary (PCS) and the mental component summary (MCS). Work participation was assessed with a self-reported questionnaire. QoL and work participation were compared between FSS and MD patients, using Chi-squared tests and ANCOVA-analyses, adjusted for age, sex, educational level, and mental disorders.

Results
Of the participants, 11.0% (n=9861) reported a FSS, and 2.7% (n=2395) reported a MD. Total QoL, PCS and MCS were significantly lower in all separate FSS and MD compared to controls (P≤ .001). Clinically relevant differences in QoL were found between chronic fatigue syndrome and multiple sclerosis patients, and between fibromyalgia syndrome and rheumatoid arthritis patients. Compared to controls, FSS and MD patients reported a comparably reduced working percentage, increased sick absence, early retirement due to health-related reasons, and disability percentage (P≤ .001).

Conclusion
Functional limitations in FSS patients are common, and as severe as those in patients with MD when looking at QoL and work participation, emphasizing that FSS are serious health conditions.


Abbreviations

• CFS, chronic fatigue syndrome;
• FMS, fibromyalgia syndrome;
• FSS, functional somatic syndromes;
• IBD, inflammatory bowel disease;
• IBS, irritable bowel syndrome;
• MCS,mental component summary;
• MS, multiple sclerosis;
• PCS, physical component summary;
• QoL, Quality of Life;
• RA, rheumatoid arthritis;
• MD, well-defined medical diseases

Keywords

• Chronic disease;
• Employment;
• Quality of Life;
• Sick leave;
• Somatoform disorders

 

[Dolphin]

Thread on media coverage in the Netherlands on this:
http://forums.phoenixrising.me/inde...nderstood-disease-suffering-is-the-same.37765

 

[Dolphin]

There was no psychobabble (I recall) in this paper, which is unusual given it uses the term "functional somatic syndromes".

Also, no mention of CBT, GET or similar.

 

[Esther12]

There was no psychobabble (I recall) in this paper, which is unusual given it uses the term "functional somatic syndromes".

Also, no mention of CBT, GET or similar.

I have to admit that from the abstract (and the journal it was published in) I thought it would probably be an excuse for 'need more money for BPS rehabilitation' stuff.

 

[Dolphin]

MCS=Mental Composite Score

Here's an example where one would often get psychological speculation, attributions, etc. but instead they give a sympathetic interpretation.

The clinically relevant lower scores in the MCS in CFS and FMS patients might be due to the difficulty in dealing with their disease symptoms. For instance, FSS patients reported that they felt not be taken seriously, because the absence of detectable pathology is sometimes interpreted as evidence that their problems are mental rather than physical[44]. Moreover, FSS patients felt stigmatized, since others tended to doubt the accuracy and truthfulness of patients’ reported disabling symptoms[45,46]

Another reason that the MCS scores can be lowered in CFS cohorts (and probably FMS also) (that the authors may not be aware of) is that the MCS is partly made up of scores from energy/vitality and social functioning (see, for example, this paper "Comparison of UK and US methods for weighting and scoring the SF-36 summary measures" free at: http://jpubhealth.oxfordjournals.org/content/21/4/372.long).

These scores can be lowered in CFS independent of any mental health issues.

 

[Dolphin]

If you had more than one FSS e.g. CFS and FMS, you were excluded: only those with one FSS were included. Given previous research has found that those having CFS and FMS are more ill/disabled on average than those with CFS alone, this would have the effect of underestimating the level of disability found in CFS (or FMS and IBS).

 

[Dolphin]

To ensure the reliability of the study, persons with severe psychiatric or physical illness, and those not being able to visit the general practitioner, to fill in the questionnaires, and/or to understand the Dutch language were excluded. Parents and children were not excluded in case of the mentioned criteria when a representative was willing to assist these participants in the performance of the study.

This could have the effect of meaning the sample was less disabled than a complete sample of those with CFS (and FMS, IBS, etc.)

 

[Dolphin]

A higher percentage of CFS patients were working than one would often see:

Controls:

Working %
All: 67.8%
Men: 73.8%
Women: 63.1%

Hours worked:
All: 33.6
Men: 40.5
Women: 27.2

CFS
All: 50.3%
Men: 59.6%
Women: 44.1%

Hours worked:
All: 33.5
Men: 40.6
Women: 27.1

Also the hours worked was high.

Sick leave wasn't huge (days/3 months)
Controls: 0.8
CFS: 1.5

Frequent sick leave (%):
Controls: 3.6%
CFS: 13.7%

CFS was self-reported. I have concerns that when one asks people if they have "chronic fatigue syndrome" one can get people who have chronic fatigue (I have similar concerns about the Canadian studies that quote high prevalence rates for CFS).

 

[Dolphin]

Note that controls weren't all healthy:

Controls were defined by the absence of the self-reported FSS or MD on which this study focused.

Table 1 has a table of frequent medical conditions that were found in the controls.

 

[Dolphin]

Early retirement and work disability among the working age population:

Early retirement due to health-related reasons (%)
Controls: 2.0
CFS: 15.4
MS: 20.5

Disability % Mean
Controls: 53.5
CFS: 75.8
MS: 80.1

Participants who indicated that they were disabled for work were asked for what percentage they were disabled for work (ranging between 0–100%). According to the definition of Statistics Netherlands, the working population was defined working ≥12 h per week[33].

 

[Dolphin]

A limitation:

Another limitation is that lifetime diagnoses of FSS were available instead of current diagnoses. A previous study in a general population cohort from the same geographical area suggests that a vast majority (i.e. 75%–100%, depending on the syndrome) of the participants that reported a history of CFS, FMS or IBS, still had this syndrome at the time of reporting[43]. Moreover, the majority of the patients with CFS (>95%) and FMS (>93%) in the current study recently experienced fatigue and musculoskeletal pain in the past week(s).

 

[Dolphin]

Concluding paragraph:

In summary, this population-based study revealed that the functional limitations in FSS patients are common and as severe as those in patients with MD, despite the absence of underlying organic pathology. It shows that FSS do not only have individual, but also societal consequences. Therefore, health care professionals in public and occupational health, researchers, and society should pay more attention to these disorders and their consequences in terms of QoL and work participation. Increased knowledge and understanding of the etiology and impact of FSS may eventually improve the treatment of a significant proportion of the population (in our cohort 11.0%) who is suffering from FSS. The study urges the need for more research on FSS, a relatively neglected research area. Especially studies on a better understanding of the etiology and treatment of these disorders are needed. Specific suggestions for studies with regard to QoL and functional limitations are to examine the cause–effect relationships between FSS and QoL as well as work participation, and to gain insight into the working conditions and work environment of FSS patients.

 

[A.B.]

In summary, this population-based study revealed that the functional limitations in FSS patients are common and as severe as those in patients with MD, despite the absence of underlying organic pathology.

The fallacy of psychological inference: no physical cause for these symptoms is known, therefore no physical cause exists, and therefore the cause must be psychological.

 

[Dolphin]

I don't want to confuse anyone but the first two parts of these sentences are incorrect (I'll put in a strike-through line to try to stop people getting confused).

Controls, FSS, and MD patients reported a comparable working percentage. However, those FSS and MD patients that were working, worked fewer hours per week and reported higher sick absence compared to controls.

 

[Dolphin]

In summary, this population-based study revealed that the functional limitations in FSS patients are common and as severe as those in patients with MD, despite the absence of underlying organic pathology.

The end of that sentence is rather stark. There is a chance that was an unfortunate short hand and what they meant was "known organic pathology."

Here's the start for what it's worth:

The experience of physical symptoms in the general population is common[1]. When medical evaluation does not reveal sufficient explanatory pathology, these symptoms are referred to as functional somatic symptoms. Functional somatic symptoms often occur together resulting in functional somatic syndromes (FSS). Chronic fatigue syndrome (CFS),fibromyalgia syndrome (FMS), and irritable bowel syndrome (IBS) are the most well-known FSS. CFS is mainly characterized by fatigue without sufficient explanatory pathology[2], FMS patients suffer from musculoskeletal pain with unknown etiology[3], and IBS patients suffer from bowel complaints with unknown underlying pathology[4]. These core symptoms are typically accompanied by various additional symptoms. The etiology of all FSS is assumed to be multifactorial involving biological, psychological, and social factors[5].

Because physicians cannot find a disease-based explanation for these syndromes nor always offer appropriate treatment, theyfind it often difficult to deal with FSS. Physicians might also be frustrated as a result of difficulties in controlling the symptoms and the patients’emotional responses to the syndromes[6].

 

[Dolphin]

Cort Johnson piece (June 1, 2015) on this paper:

ME/CFS and Fibromyalgia As Functionally Impairing As Major Diseases in Medical World
http://www.cortjohnson.org/blog/2015/06/01/mecfs-and-fibromyalgia-as-functionally-impairing-as-major-diseases-in-medical-world/

 

[Dolphin]

Discussion of another paper by the same team (well, three of the four authors are the same) on the same group of patients:

Mood and Anxiety Disorders in Chronic Fatigue Syndrome, Fibromyalgia, and Irritable Bowel Syndrome: Results From the LifeLines Cohort Study
http://forums.phoenixrising.me/inde...d-irritable-bowel-syndrome.39057/#post-625179

I didn't find that paper as interesting

 

[Sean]

The end of that sentence is rather stark. There is a chance that was an unfortunate short hand and what they meant was "known organic pathology."

Yes, just one little word makes all the difference.

 

[Valentijn]

A higher percentage of CFS patients were working than one would often see:

Controls:

Working %
All: 67.8%
Men: 73.8%
Women: 63.1%

Hours worked:
All: 33.6
Men: 40.5
Women: 27.2

CFS
All: 50.3%
Men: 59.6%
Women: 44.1%

Hours worked:
All: 33.5
Men: 40.6
Women: 27.1

By Dutch standards, those hours are too high. The average here is about 29 hours per week. Mothers of young children very rarely work at all (childcare is too expensive, plus tradition), and mothers of older children will generally be volunteering or working only part time.

It's also pretty easy for people to work part time when needed. So it doesn't make much sense that the supposedly sick CFS men are all still working full time, if they're working at all.

CFS was self-reported. I have concerns that when one asks people if they have "chronic fatigue syndrome" one can get people who have chronic fatigue (I have similar concerns about the Canadian studies that quote high prevalence rates for CFS).

The Netherlands has the additional problem that CFS is often explicitly equated with burnout. Burnout is generally described as being a temporary adrenal and/or mood dysfunction triggered by a stressful job.