School Functioning in Adolescents With Chronic Fatigue Syndrome, 2018, Knight et al

Sly Saint

Sly Saint

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Sarah Jenette Knight1,2,3*,
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Jennifer Politis1,4,
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Christine Garnham1,4, Adam Scheinberg1,2,3,5 and Michelle Anne Tollit1,2,4,6
  • 1Murdoch Children's Research Institute, Melbourne, VIC, Australia
  • 2The Royal Children's Hospital, Melbourne, VIC, Australia
  • 3Department of Pediatrics, The University of Melbourne, Melbourne, VIC, Australia
  • 4Melbourne Graduate School of Education, The University of Melbourne, Melbourne, VIC, Australia
  • 5Department of Pediatrics, Monash University, Melbourne, VIC, Australia
  • 6The Royal Children's Hospital Education Institute, Parkville VIC Australia, Melbourne, VIC, Australia
Adolescent chronic fatigue syndrome (CFS) is a complex condition that is characterized by intense, medically unexplained fatigue together with a range of sleep, pain, cognitive, neuroendocrine, and immune symptoms (1). The estimated incidence of CFS in children and adolescents varies widely (from 0.003 and 2.0%); however, it is consistently found to be more common in females (2, 3). CFS is associated with significant functional disability and this has a considerable impact on emotional, physical, and social functioning (4–9).

Due to the significant functional disability associated with CFS, several studies have associated CFS with high rates of school absence (4, 9–14). The average amount of time away from school for students with CFS has been estimated to be 1 year across their school life (15).

Most studies evaluating school functioning in the context of CFS have been limited by the use of relatively narrow definitions of school functioning, such as defining school functioning solely in terms of school attendance/absence (16).

Adolescents with CFS have described difficulties with completing subject requirements and keeping up with academic work (17) and have also reported that their condition impacted on their education or career plans (18).

Beyond school attendance, domains of functioning including academic performance, school participation, and school connectedness, have seldom been formally investigated in students with CFS despite their demonstrated links to school success and positive adjustment (16, 19).

Taking a broader, more holistic approach to assessing school functioning is crucial in order to more comprehensively understand the impact of CFS and to help inform targeted strategies to optimizing educational outcomes in this vulnerable group (16). There is also limited research directly comparing school functioning in adolescents with CFS with their healthy peers (16).
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https://www.frontiersin.org/articles/10.3389/fped.2018.00302/full
 
Abstract:

Background: It is well known that adolescents with chronic fatigue syndrome (CFS) experience greater school absenteeism compared to healthy adolescents. Less is known about other important aspects of school functioning including school participation, school connectedness, and academic performance in students with CFS. The aim of this study was to compare school functioning as a multifaceted construct in adolescents with CFS to healthy adolescent peers. We also explored whether illness factors were associated with school functioning in adolescents with CFS.

Methods: Thirty-nine participants with CFS and 28 healthy controls (aged 13–17 years) completed a range of subjective and objective measures of school functioning, as well as measures of fatigue and emotional symptoms.

Results: Adolescents with CFS demonstrated significantly higher rates of school absence, as well as poorer school-related quality of life, reduced school participation, poorer connectedness with school, and reduced academic performance. Fatigue severity and emotional symptoms were significantly associated with most aspects of school function.

Conclusions: Adolescents with CFS are at increased risk for poor school functioning across a range of indicators which extend beyond school absenteeism.
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The relationships between illness factors (e.g., fatigue severity), emotional symptoms, and school functioning in CFS have seldom been a focus of research. In a large sample of patients with CFS, Crawley and Sterne (13) found that children with better physical functioning were more likely to attend school. However, there was no evidence that gender, age, illness duration, anxiety, depression, or pain were associated with school attendance
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Emotional symptoms were not connected with school absence in this study, either.
 
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Diagnoses were made via diagnostic interview, laboratory examinations and a medical examination using the Canadian criterion reference (1).

Jason LA, Bell DS, Rowe K, Van Hoof ELS, Jordan K, Lapp C, et al. A pediatric case definition for myalgic encephalomyalitis and chronic fatigue syndrome. J Chron Fat Synd. (2006) 13:1–44. doi: 10.1300/J092v13n02_01
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Note that these are not the main Canadian ME/CFS criteria for adults
 
the CFS group who were absent for, on average, 40% of the school term due to illness. These findings suggest that students with CFS are missing substantial amounts of school and report restrictions to school participation. Not only do these limitations have implications for the development of core academic skills, but such functional impairment also has potential to impact on social competencies which are integral for healthy adolescent development. Schools need to work toward supporting these students to ensure they remain connected and engaged with school when their medical condition impacts on their ability to physically attend school on a full-time basis.
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When controlling for age and intelligence, the adolescents with CFS showed significantly reduced academic functioning compared to the healthy control sample, overall. Of note, both groups displayed high SES (based on educational status of primary caregiver) as well as above average intelligence. While the mean score for academic functioning for the CFS group fell within the average range in the context of normative population expectations, given the relatively high SES of the group and the overall above average level of intellectual functioning, these results suggest that compared to healthy controls, these adolescents may not be performing to their full potential academically (38). These are valuable findings as to the author’s knowledge this is the first analysis of academic performance in adolescents with CFS using a standardized achievement test. Other studies exploring school performance in CFS using patient self-reports (17, 39) have also reported concerns regarding academic achievement.
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Schools, in our exoerience, simply can' t cope with prolonged part time attendance. Part time attendance is (usually) geared towards a return to full time attendance .

A combination of virtual learning and school attendance could offer the best of both worlds, however it is seldom available. Ideally suited for mildly affected , this could reduce the potential for progression to moderate . The no isolation robot could come into its own here.

I do not think educationalists appreciate the effort it takes simply to go to school, let alone be capable of learning.This is where simple measurement of attendance fails to see the bigger picture. Potential is not achieved BECAUSE children are forced to school and are being set up to fail.

There is no national MOODLE for simple information dissemination, let alone virtual teaching universally available for those who need it either for a few months or full time, and yet there are mant private providers in England and Wales ( interhigh, Nissai, apricot learning...). None in Scotland. Given Australia' s history of providing distsnce learning options, i would imagine that there could be more flexibility / availability.

Online virtual education could be a godsend - preserving function, limiting PEM, maximising potential for those for whom school attendance simply makes things worse.

As you fall further behind your peers it makes things much more difficult on all fronts.

The whole concept of school needs to change.
 
Academic Performance
Participants were administered the Wechsler Individual Academic Achievement Test—Australian Abbreviated—Second Edition (WIAT-II-A) (32), to assess their current academic ability. The WIAT-II-A is a reliable and valid, age-standardized measure that assesses the academic achievement of individuals across three subtests: Word Reading, Numeral Operations, and Spelling. Scores from subscales are added to provide an overall academic composite. Standard scores have a mean of 100 and standard deviation of 15. Higher scores indicate better academic functioning.
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No significant associations were observed between fatigue and emotional symptoms, and academic functioning. The explanation for this discrepancy is unclear; although it is possible that more complex academic skills not assessed in the current study (e.g., comprehension, written expression) could be affected by these factors and further research into this area is warranted.
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Before I read the results, I thought the measure used might not be the best to assess what they called "academic performance".

Someone with the condition might have general academic skills built up over a number of years but still faced difficulty learning and remembering information and so might have worse academic performance than expected for them. Also, there is a lot of variation in academic ability so somebody could be performing better than a population average but below their potential.
 
This study investigated school functioning from the perspective of the adolescent. Future research could incorporate reports from other informants about school functioning (e.g., parents and teachers) to obtain a more thorough understanding of school functioning.
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While the sample characteristics (e.g., age, gender, and SES) are similar to what has been found in epidemiological studies of adolescents with CFS (3, 4, 12, 41, 42), it should be acknowledged that the adolescents participating in this study were recruited from a tertiary hospital and were required to attend the hospital in person for the academic assessment. Therefore, they may not be representative of all adolescents with CFS in the community (e.g., adolescents less severely affected may be managed in primary care and adolescents more severely affected by the illness may not have been well enough to attend the hospital for assessment).
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These points seem reasonable to me:
Lastly, the cross-sectional nature of analysis employed in the study prevents exploration of the trajectory of school functioning over time as well as factors or mediators that might influence change in school functioning over time. To expound these questions, future studies could incorporate longitudinal methods to follow the course of CFS and school functioning over time. Despite the present study containing a number of limitations requiring consideration, given the novelty of this research, the study provides a large contribution to our preliminary understanding of school functioning in adolescents with CFS and highlights directions for future research. Future studies should consider investigating academic performance beyond basic reading, spelling and mathematics, as well as the relative contributions of factors such as absenteeism, fatigue, cognitive difficulties, and emotional symptoms, to academic performance.
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School is the principle location for the development of not only academic skills, but also cognitive, social, and community-related skills during childhood and adolescence. Therefore, the impact that CFS has on school functioning may place these adolescents at a heightened risk of long-term maladjustment across a range of key developmental areas.
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Sad for those this is true for (I might think a lot may catch up eventually).
 
Given the unique needs of each adolescent, as well as vast differences across school settings, tailored and individualized school planning that addresses not only school attendance, but also strategies to minimize the impact of the illness on school-related quality of life, school participation, school connectedness, and academic outcomes, will be crucial.
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Schools need to work toward supporting these students to ensure they remain connected and engaged with school when their medical condition impacts on their ability to physically attend school on a full-time basis.
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Either physically attend, with sufficient cognitive function to engage productively. Or sufficient cognitive function to engage productively while working from home.
Dolphin said:
but still faced difficulty learning and remembering information
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Definitely this. My capacity to learn and remember fell dramatically when I got sick.
 
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