Health-related quality of life in patients with ME/CFS an Australian cross-sectional study - Eaton-Fitch et al Jan 2020

Sly Saint

Senior Member (Voting Rights)
Health-related quality of life in patients with myalgic encephalomyelitis/chronic fatigue syndrome: an Australian cross-sectional study

Abstract
Background

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious and debilitating disorder associated with significant disruptions in daily life including. This study aimed to examine the impact of sociodemographic and patient symptom characteristics on health-related quality of life (HRQoL) of Australians with ME/CFS.

Methods
Self-reported data collected from 480 individuals diagnosed with ME/CFS were obtained between August 2014 and August 2018. This cross-sectional survey analysed sociodemographic, symptom characteristics and HRQoL according to the 36-Item Health Survey (SF-36). Multivariate linear regression models were used to determine ME/CFS symptoms associated with eight domains of HRQoL.

Results
Reported HRQoL was significantly impaired in ME/CFS patients across all domains compared with the general population. Scores were the lowest for physical role (4.11 ± 15.07) and energy/fatigue (13.54 ± 13.94). Associations with females, higher body mass index (BMI), employment status, cognitive difficulties, sensory disturbances and cardiovascular symptoms were observed in the physical functioning domain. Impaired pain domain scores were associated with high BMI, annual visits to their general practitioner, flu-like symptoms and fluctuations in body temperature. Reduced well-being scores were associated with smoking status, psychiatric comorbidity, cognitive difficulties, sleep disturbances and gastrointestinal difficulties.

Conclusion
This study provides evidence that ME/CFS has a profound and negative impact on HRQoL in an Australian cohort.
https://link.springer.com/article/10.1007/s11136-019-02411-6
 
Despite looser criteria that capture less disabled (in addition to the fact that more severe patients are harder to reach), the numbers are abysmal. Although looking at the general population is suspect, the SF-36 heavily skews to 90+ and here the averages are actually lower than the original PACE target of 85 so this is odd. I guess this is because the general population includes all sick and disabled, including some ME patients.

Oh boy, I just saw the note. The general population SF-36 is a 1997 study and the authors explicitly state there are no newer data.
General population scores were obtained from the Australian Bureau of Statistics 1995 National Health Survey [13]. This survey presents an overview of health status (e.g. prevalence of disease) and factors which may influence health (e.g. smoking, exercise). The majority of Australians considered themselves as being in good health with 83% reporting their health status as good, very good or excellent. Three-quarters of the population experience one or more long-term condition lasting six months or longer. Common illnesses reported in the general population include asthma (11%), headache (13%), hypertension (10%), short sighted (21%) and arthritis (15%).

There seems to be some selection effect with an average of 12 GP visits per year. Most of us barely even bother anymore, 12 is really on the high end. I couldn't even manage 12 (± 16.2!) in-person visits even if my GP was driving the whole thing, most would have to be asynchronous. I think I just about had somewhere around 12 GP visits ever since I got sick and most of those were basically "last test showed nothing, see you in 3-4 months so we can try something else".

Nice that it included onset age, average of 30 ± 12. Most of us mention showing signs much earlier than what we consider onset, so even that is skewed. Incredible how much damage was done by lazy researchers who wanted it to be a bored middle-aged housewife episode. Add to that today's publication of Jason's prevalence of 0.75% in children.

Would really be nice to have stratification based on diagnostic criteria, using Fukuda means the numbers will appear better than they are.

australia-sf-36.png

Ultimately, the important part is this:
Our findings are consistent with large studies published from the United States of America (USA), Denmark and United Kingdom
What I fail to understand is why health-related quality of life appears to be unimportant to public health and medical authorities. Controversial opinion, I guess, but it feels like it should be really important. Oh, well.
 
Despite looser criteria that capture less disabled (in addition to the fact that more severe patients are harder to reach), the numbers are abysmal. Although looking at the general population is suspect, the SF-36 heavily skews to 90+ and here the averages are actually lower than the original PACE target of 85 so this is odd. I guess this is because the general population includes all sick and disabled, including some ME patients.

I'd argue It is not meaningful to compare a general population as this is not matched to the age and gender of patients. The general population of Australia has many elderly people which has an impact on physical functioning. 90+ scores are for working age participants without severe disabilities.
 
I'd argue It is not meaningful to compare a general population as this is not matched to the age and gender of patients. The general population of Australia has many elderly people which has an impact on physical functioning. 90+ scores are for working age participants without severe disabilities.
Yes, and in this study, they specifically restricted the ME/CFS sample to those aged 18-65.
 
I don't recall any discussion in the paper about this set of data
WHODAS
Communication and understanding 35.58 ± 18.13
Mobility 43.32 ± 22.43
Self-Care 17.53 ± 19.73
Getting along 32.74 ± 22.98
Life activities 56.64 ± 27.43
Participation in work/school 58.40 ± 27.26
Participation in society 48.61 ± 22.43
https://www.who.int/classifications/icf/docs/36item_Scoring_Template_Simple_Scoring.xlsx?ua=1

Information on the questionnaire can be read here:
https://www.who.int/classifications/icf/whodasii/en/

They presumably exchanged them to 0-100 scoring as it doesn't seem possible to score these scores with raw scoring

(where 0 = no disability; 100 = full disability).

It looks like population data could have been used to compare to these scores.
 
Good to see the following which I don't recall seeing much, if at all, in other papers:

Robustness checks were performed using ordinal logistic regression and due to the non-normal nature of the data, quantile regression was also performed. Any discrepancies in results obtained from these models were recorded in the results.

Robustness check

Due to the nature of some survey responses and the nonnormal nature of the data, robustness checks were performed. Difference in statistical significance were reporting for the following using quantile regression: (i) a loss of significance for cognitive difficulties was reported for physical functioning; (ii) for pain a statistical significance was lost for BMI, employment status, annual visits to the GP and temperature instability; (iii) for general health statistical significance was lost for age; (iv) statistical significance was lost for employment status for social functioning; (v) for energy/fatigue a loss of significance was reported for gender, age and smoking status and (vi) for role emotional statistical significance was lost for annual visits to the GP.

Ordinal logistic regression was also performed and differences in statistical significance were reported for the following: (i) for physical role statistical significance was lost for age and (ii) for pain statistical significance was lost for employment status.
 
Technically, all of the inequalities in the last sentence are the wrong way around, though most people could probably have guessed it
SF-36 has been recommended as a sufficient measure to determine substantial reductions in HRQoL. Reeve’s empirical ME/CFS case definition recommends scores below the 25th percentile of any of the four mentioned subscales including; (i) Physical Functioning ≤ 70; (ii) Role Physical ≤ 50; (iii) Role Emotional ≤ 66.7 and (iv) Social Functioning ≤ 75 [11]. A review by Jason and colleagues reported that the SF-36 scales have adequate discrimination between ME/CFS patients and healthy individuals following Reeve’s empirical cut-off scores [15]. While Role Emotional was reported to have the worst sensitivity and specificity for ME/CFS patients, Role Physical (≤ 50), Social Functioning (≤ 62.5) and Energy/Fatigue (≤ 35) had the best sensitivity and specificity [15]. In this present investigation, few participants did not fall within these cut-offs with 11.4% obtained Social Functioning scores ≤ 62.5, 10.4% obtained Energy scores ≤ 35 and 3.5% obtained role physical scores ≤ 50.
 
Gender differences, for what they are worth:
We found the females reported significantly reduced scores for physical functioning and energy/fatigue; however, scores for other domains were not significant between genders.
 
Higher BMI had a significant impact on physical functioning, pain, general health, as well as energy/fatigue scores. The authors would like to note that physicians and patients need to carefully consider the management of physical activity to improve BMI in ME/CFS patients. Previous investigations have reported a marked onset of fatigue and poor recovery in ME/CFS patients following physical activity [1, 25]. ME/CFS patients suffer from exacerbated fatigue following physical exertion and can exercise less often and to a lesser intensity than healthy controls [22]. Few studies have examined the association of weight gain/obesity with ME/CFS. Flores and colleagues reported that overweight/ obese ME/CFS patients had significantly reduced SF-36 disability outcomes [26]. Therefore, comorbid weight has consequences on physical functioning and HRQoL subsets. Impaired physical functioning and severe post-exertional malaise may contribute to inactivity as physical functioning was also associated with cardiovascular complaints.
They don't point out that lower physical functioning, if it correlated with low activity levels, would mean fewer calories were being burned which could lead to a higher BMI.
 
Fourth, data obtained during this investigation were compared to healthy population norms released 25 years ago.
I presume "healthy" is an error here. They don't look like the scores of healthy people, but those of the general population. Elsewhere in the paper they are referred to as general population scores.
 
Study design and setting

This study utilises a cross-sectional survey during a fouryear period from August 2014 to August 2018 that collected patient level data for biological investigations into ME/ CFS at NCNED (National Centre for Neuroimmunology and Emerging Diseases) research centre. ME/CFS patients across Australia volunteered in this survey in response to online recruitment advertisements. To be eligible for this study, participants were required to: (1) report experiencing ME/CFS illness; (2) be between 18 and 65 years of age; and (3) be a resident of Australia. Informed consent was obtained by agreeing to terms and conditions disclosed online or signing a hard copy sent via email. This study was approved by Griffith University Human Research Ethics Committee (HREC reference: MSC0413).
What percentage of testing is done in people's homes and how much requires participants to travel to a site? This could give information on whether the more severely affected were underrepresented.
 
comorbid weight has consequences on physical functioning and HRQoL subsets.

N=1 here, but anyway.

I was slim when I first became ill and as my ability to exercise and function dropped like as stone my weight crept up.

In recent years I gradually dropped 4-5 dress sizes - can't give amount in weight as I don't own a scales. None of this was down to exercise as I still can't, though I really want to.

My BMI must have dropped fairly significantly. Do I feel any better? No, not really. Do I have more stamina? No. I don't feel I have any more energy. There's just a bit less of me.
 
I don't know if the survey was ever published, it was in the US but they were looking at weight. I was going to do it, but they asked what your weight was. It was so stupid. My weight when I became ill is the important thing not what it is after decades of illness and age is a factor too since weight at fifty is likely to be more than weight at 14.

Then there is amitriptyline which can cause a large increase in weight but is often the first medication people with CFS are given.

There is information it would be good to know about weight and ME. I felt there were times I put on weight with no obvious reason and others lose weight in the same way. So frustrating when research money is used but doesn't give useful answers.
 
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