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Health related quality of life in adolescents with chronic fatigue syndrome: a cross-sectional study

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
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721
Location
Canada
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4490669/pdf/12955_2015_Article_288.pdf
(Open access)

This was published a few months ago, but doesn't seem to have been posted here.

Health related quality of life in adolescents with chronic fatigue syndrome: a cross-sectional study
Anette Winger,
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Gunnvald Kvarstein, Vegard Bruun Wyller, Mirjam Ekstedt, Dag Sulheim, Even Fagermoen, Milada Cvancarova Småstuen, and Sølvi Helseth
Author information ► Article notes ► Copyright and License information ►

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Abstract
Aim
To study health related quality of life (HRQOL) and depressive symptoms in adolescents with chronic fatigue syndrome (CFS) and to investigate in which domains their HRQOL and depressive symptoms differ from those of healthy adolescents.

Background and objective
Several symptoms such as disabling fatigue, pain and depressive symptoms affect different life domains of adolescents with CFS. Compared to adolescents with other chronic diseases, young people with CFS are reported to be severely impaired, both physiologically and mentally. Despite this, few have investigated the HRQOL in this group.

Method
This is a cross-sectional study on HRQOL including 120 adolescents with CFS and 39 healthy controls (HC), between 12 and 18 years. The Pediatric Quality of Life Inventory™, 4.0 (PedsQL) was used to assess HRQOL. The Mood and Feelings Questionnaire assessed depressive symptoms. Data were collected between March 2010 and October 2012 as part of the NorCAPITAL project (Norwegian Study of Chronic Fatigue Syndrome in Adolescents: Pathophysiology and Intervention Trial). Linear and logistic regression models were used in analysis, and all tests were two-sided.

Results
Adolescents with CFS reported significantly lower overall HRQOL compared to HCs. When controlling for gender differences, CFS patients scored 44 points lower overall HRQOL on a scale from 0–100 compared to HCs. The domains with the largest differences were interference with physical health (B = −59, 95 % CI −54 to −65) and school functioning (B = −52, 95 % CI −45 to −58). Both depressive symptoms and being a patient were independently associated with lower levels of HRQOL

Conclusion
The difference in HRQOL between CFS patients and healthy adolescents was even larger than we expected. The large sample of adolescents with CFS in our study confirms previous findings from smaller studies, and emphasizes that CFS is a seriously disabling condition that has a strong impact on their HRQOL. Even though depressive symptoms were found in the group of patients, they could not statistically explain the poor HRQOL.
 

SOC

Senior Member
Messages
7,849
Any idea what criteria they used to identify so-called CFS patients? Or are these simply chronic fatigue (the symptom) patients?
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
Any idea what criteria they used to identify so-called CFS patients? Or are these simply chronic fatigue (the symptom) patients?
Criteria for inclusion and exclusion

CFS patients
Inclusion criteria: Persisting or constantly relapsing fatigue lasting 3 months or more. Age ≥ 12 years and < 18 years
Functional disability resulting from fatigue to a degree that prevent normal school attendance
Age ≥ 12 and < 18 years

Exclusion criteria: Another current process or chronic disease or demanding life event that might explain the fatigue Another chronic disease
Permanent use of pharmaceuticals (including hormones)
Permanent use of pharmaceuticals (including hormones) possibly interfering with the measurements
Permanently bed-ridden
Positive pregnancy test
Pheocromocytoma
Evidence of reduced cerebral and/or peripheral circulation due to vessel disease
Polyneuropathy
Renal insufficiency
Known hypersensitivity towards clonidine or inert substances (lactose, saccarose) in capsula
Abnormal ECG (apart from ectopic beats)
Supine heart rate < 50 beats/min
Supine systolic blood pressure < 85 mmHg
Upright systolic blood pressure fall > 30 mmHg


The criteria are designed for the randomized control trial in the NorCAPITAL-project (The Norwegian Study of Chronic Fatigue Syndrome in Adolescents: Pathophysiology and Intervention Trial; Clinical Trials ID: NCT01040429), which explores possible mechanisms of CFS, the effect of low-dose clonidine treatment, and patients’ experiences as adolescents with CFS (9)

Yup. It's pretty broad and doesn't match any diagnostic criteria that I know of.

They did find a pretty high level of disability.
with adolescents maybe there are less possible mis-diagnoses? ( less chronic illness in general, and possibly more thorough testing when it is a child with very ill health)?
Just a guess though.

Also annoying/odd they seem to be screening out blood pressure abnormalities as these are pretty standard with ME. Not sure on the figures for adolescents specifically though.
 

Sean

Senior Member
Messages
7,378
Permanently bed-ridden
Evidence of reduced cerebral and/or peripheral circulation due to vessel disease
Supine heart rate < 50 beats/min
Supine systolic blood pressure < 85 mmHg
Upright systolic blood pressure fall > 30 mmHg

If they excluded patients with these features, and still got a low level of QOL, imagine how much lower it would have been if those patients had been included.
 

SOC

Senior Member
Messages
7,849
Are there any other diseases where researchers get to define the disease any way they want and claim their results apply to the patient community in general?

Isn't there some kind of requirement that if they are claiming to study a certain disease they should use some established definition and state in their abstract what definition they used so that readers know to whom the research applies? Of course there isn't. :rolleyes:

If I'm researching something about squirrels, do I get to include any rodent and say my conclusions are about squirrels? If I'm researching treatments for emphysema, do I get to include anyone with a cough and say the results apply to emphysema patients?

Sometimes I think medical research has the sloppiest methodology of all types of research... and that's saying a lot. (I know that's probably not true, but this kind of thing is so appalling and infuriating, it's hard not to think the worst of medical so-called research).
 
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SOC

Senior Member
Messages
7,849
Come on down, Sigma 6. :woot:

Yeah, I know, not realistic for the messier world of medical research. But we can dream. :sleep:
Okay, Sigma 6 may be more than they can handle. :p But surely they can do better than they're doing currently. I will continue to hope and dream. :sleep:

ETA: And rant and rave. :bang-head::bang-head::bang-head: :mad: