RCPCH conference 2019 abstract: Characteristics of a patient population attending a specialist outpatient service for CFS, McCourt et al

[Trish]

Characteristics of a patient population attending a specialist outpatient service for chronic fatigue syndrome

Abstract
Aims To characterise the patient population of an NHS tertiary adolescent Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) service.

Methods We retrospectively collected data about 118 patients aged 11–19 referred between April 2012-April 2014 who were followed up for two years or more. Patients seen but not diagnosed with CFS/ME were excluded. Notes were reviewed and relevant data collected. The data were analysed to produce descriptive statistics.

Results Most patients were female (67%) with an average age of 15.3 years. The population was split between those with a co-morbidity (48.3%) and those without ( table 1 ). Physical co-morbidities included asthma and type 1 diabetes. Psychiatric co-morbidities included anxiety and depression diagnosed prior to referral. The severity of CFS/ME is described in table 2 . 38.1% of patients were from single parent households, and over one-quarter (27.1%) of patients were not in contact with one parent. Deprivation is described in table 3 . Most patients (64.2%) attended state schools, 11.7% did not attend school and 14.2% attended private schools. The remainder were home schooled or unknown. Current or historical bullying was experienced by 16.1% of patients. Regarding outcomes, 39.1% of patients recovered (defined as discharged due to recovery or increasing school attendance by >25% at 6 months), 16.5% were discharged due to non-attendance and the remainder were transferred to adult CFS/ME and other services.

Conclusion 60% of patients were moderately or severely affected. Co-existent medical and psychiatric co-morbidities were common. Females, children from single parent households1, privately educated children2 and those who do not attend school3 are over-represented relative to the general population. The patient population is less deprived than average. Future work aims to identify significant associations between patient characteristics and outcomes to identify predictors of recovery.

For more from the conference see this thread:
https://www.s4me.info/threads/me-cf...cs-and-child-health-conference-may-2019.9555/

 

[Trish]

Regarding outcomes, 39.1% of patients recovered (defined as discharged due to recovery or increasing school attendance by >25% at 6 months), 16.5% were discharged due to non-attendance and the remainder were transferred to adult CFS/ME and other services.

Strange definition of recovery. So if they now manage 1.25 days of school/week instead of 1 day per week they are 'recovered'???

 

[rvallee]

Future work aims to identify significant associations between patient characteristics and outcomes to identify predictors of recovery.

What's with the damn obsession over this? It's a complete waste of everything. Doing the same things over and over again, never producing anything of value. Completely irresponsible misuse of limited resources.

 

[Hoopoe]

Strange definition of recovery. So if they now manage 1.25 days of school/week instead of 1 day per week they are 'recovered'???

If you can't move the ball to the goal, move the goal posts...

People that tend to define recovery like this are tacitly admitting that they cannot obtain satisfactory recovery rates when recovery is defined the way everyone else understands it.

 

[DokaGirl]

Again, a very low bar for recovery. But hurrah anyways! Good grief! How about some biomedical treatment?! Oh right....there isn't really any - at least not government approved.

Gee, wonder if the authors are angling towards the theory broken homes create "cfs". No thought it might be genetics - so who your parents are, but not if they're separated or divorced.

Must be endlessly fascinating for the BPS folks to create these theories. They are easy to do though. Pretty much anyone can make up these theories.

 

[Amw66]

Given that this age group has a better prognosis for recovery , without intervention, ( does this ever get allowed for as a variable ?) seems that more trees have been killed in vain
( To put it diplomatically) .

 

[Hutan]

Current or historical bullying was experienced by 16.1% of patients.

More than half of children aged 11 to 16 have been bullied about the way they look, with 40% targeted at least once a week, research has found.
YMCA England and Wales’s In Your Face report, published on Wednesday, says that “comments and criticisms of young people’s appearance have become part of everyday life”, with 55% of children affected.

Oh no, could it be children with CFS/ME haven't been bullied enough?

Ah, now I understand the rationale for GET.

 

[Mithriel]

If a higher percentage of patients than in the general population attended a fee paying school it follows that this would change the percentages to make the group as a whole less deprived, one fact not two.

They are probably less bullied because you have to go to school or out into the world for people to know you to bully you.