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The functional status and well being of people with ME/CFS and their carers

D

Dolphin

Senior Member
Messages
17,567
Free full text at: http://www.biomedcentral.com/1471-2458/11/402

The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers.

BMC Public Health. 2011 May 27;11(1):402. [Epub ahead of print]

Nacul LC, Lacerda EM, Campion P, Pheby D, Drachler MD, Leite JC, Poland F, Howe A, Fayyaz S, Molokhia M.

ABSTRACT*:

BACKGROUND:

Diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS is largely based on clinical history, and exclusion of identifiable causes of chronic fatigue.

Characterization of cases and the impact of interventions have been limited due to clinical heterogeneity and a lack of reliable biomarkers for diagnosis and outcome measures.

People with ME/CFS (PWME) often report high levels of disability, which are difficult to measure objectively.

The well being of family members and those who care for PWME are also likely to be affected.

This study aimed to investigate the functional status and well being of PWME and their lay carers, and to compare them with people with other chronic conditions.

METHODS:

We used a cross sectional design to study 170 people aged between 18 and 64 years with well characterized ME/CFS, and 44 carers, using SF-36 v2TM.

Mean physical and mental domains scores (scales and component summaries) were calculated and compared internally and externally with reference standards for the general population and for population groups with 10 chronic diseases.

RESULTS:

SF-36 scores in PWME were significantly reduced, especially within the physical domain (mean norm-based Physical Component Summary (PCS) score = 26.8), but also within the mental domain (mean norm-based score for Mental Component Summary (MCS) = 34.1).

The lowest and highest scale scores were for 'Role-Physical' (mean= 25.4) and 'Mental Health' (mean=36.7) respectively.

All scores were in general lower than those for the general population and diseased-specific norms for other diseases.

Carers of those with ME/CFS tended to have low scores in relation to population norms, particularly within the mental domain (45.5).

CONCLUSIONS:

ME/CFS is disabling and has a greater impact on functional status and well being than other chronic diseases such as cancer.

The emotional burden of ME/CFS is felt by lay carers as well as by people with ME/CFS.

We suggest the use of generic instruments such as SF-36, in combination of other objective outcome measurements, to describe patients and assess treatments.

PMID: 21619607 [PubMed - as supplied by publisher]
Click to expand...
* I gave each sentence its own paragraph
 
D

Dolphin

Senior Member
Messages
17,567
This has lots of SF-36 data (incl. one table with 0-100 scoring)

This has lots of SF-36 data (incl. one table with 0-100 scoring)

Table_2_Nacul_et_al_2011.jpg


0-100 scoring (e.g. as used in the PACE Trial) is given in columns 3-6 in this table only. All the other tables are normalised for a mean of 50 and SD of 10 for the population.
 
D

Dolphin

Senior Member
Messages
17,567
Scores of those satisfying the Canadian ME/CFS criteria vs the others

Scores of those satisfying the Canadian ME/CFS criteria vs the others (normalised scoring):

Table_5_Nacul_et_al_2011.jpg
 
D

Dolphin

Senior Member
Messages
17,567
Regarding Role Emotional scores and the SF-36

I once had a look at some SF-36 questionnaires that had been filled in by ME/CFS patients. I was (and am) fairly sure that people hadn't read the Role Emotional questions properly. I saw somebody else mention this themselves.

Here is an extract from the questionnaire:

5. During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of your physical health?

(circle one on each line)
a. Cut down on the amount of time you spend on work or other activities
Y 1 N 3

b. Accomplished less than you would like
Y 1 N 3

c. Were limited in the kind of work or other activities
Y 1 N 3

d. Had difficulty performing work or other activities (for example, it took extra effort)
Y 1 N 3

6. During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?

(circle one on each line)
a. Cut down on the amount of time you spent on work or other activities
Y 1 N 3
b. Accomplished less than you would like
Y 1 N 3
c. Didn't do work or other activities as carefully as usual
Y 1 N 3
Click to expand...

Quite a few people had "Yes" for all three of the questions in section 6. I thought for some of them, even if it had been the case for one or more of them, I'm not sure they would have been rushing to say it in the questionnaire; it seemed to me that they hadn't read the question closely - it was part of a long questionnaire. This might be more of a problem with people with ME/CFS who only have so much concentration and mental stamina/energy.
 
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