Health-related quality of life in Young People with Chronic fatigue syndrome/Myalgic encephalomyelitis, 2022, Similä (PhD thesis)

https://ntnuopen.ntnu.no/ntnu-xmlui/handle/11250/2991015

Health-related quality of life in Young People with Chronic fatigue syndrome/ Myalgic encephalomyelitis
Similä, Wenche Ann
Doctoral thesis

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https://hdl.handle.net/11250/2991015
Date
2022
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Abstract
Summary


Background


Chronic fatigue syndrome/Myalgic encephalomyelitis (CFS/ME) is a disease that affects people of all ages. CFS/ME significantly limits the activity level of those affected, including in relation to physical activity, schooling, occupational life and social life. High levels of school absence among young people with CFS/ME result in loss of important learning and social development among peers. As such, there is increasing uncertainty about their future, and personal and socio-economic consequences could put them at risk of becoming disabled at a young age. Measurements of health-related quality of life (HRQoL), including being able to function in school, have shown that young people with CFS/ME score lower than their counterparts without CFS/ME.


Aims


The overall aim of this project was to explore HRQoL among young people with CFS/ME, including the factors associated with HRQoL in relation to school and everyday life. More specifically, the aim was to firstly (Study1) examine HRQoL, including factors that are positively or negatively associated with HRQoL, in a cohort of young people with CFS/ME. Study 1, along with the previous literature, provided the basis for an in-depth study (Study 2) to investigate the positive and negative factors that young people with CFS/ME experience in school and everyday life. Based on the findings from Study 1 and Study 2, a third study (Study 3) was planned to explore teachers’, counsellors’ and school nurses’ experiences with educational and social adaptation at school for young people with CFS/ME.


Method


To explore HRQoL and the factors associated with HRQoL among young people with CFS/ME (Studies 1 & 2), a cross-sectional survey- and interview-based study was conducted. The participants of the cross-sectional study were recruited to participate in the interview study. To explore the experiences of teachers, counsellors and school nurses with education and social adaptions at school for young people with CFS/ME (Study 3), an interview study was conducted with participants recruited among school personnel and school nurses in secondary school (educating students aged 13-16), high school (educating students aged 16-19) and educational psychological services (EPS).


Results


A total of 63 participants were included in the cross-sectional study, 18 of whom participated in the interview study. A total of 12 participants were included in the interview study with the teachers, counsellors and school nurses. In the cross-sectional study (Study 1), young people with CFS/ME scored lower on HRQoL than their counterparts who were healthy or had other chronic diseases. Contact with school and teachers was associated with a higher HRQoL among young people with CFS/ME. This association could be due to that more contact resulted from adaptations of education and social life at school, or that fewer health problems due to CFS/ME had abled the young people to maintain the contact with school and teachers. In Study 2, it was found that an adapted plan for education and social life at school for young people with CFS/ME could increase the possibility of continuing schooling with peers. The lack of an adapted plan for education and social life at school could lead to increased school absence as well as loss of education, social contact and development among peers. Subsequently, this could lead to depressive thoughts and worry about the future. The school personnel and school nurses in Study 3 experienced that young people with CFS/ME lost confidence in school. The challenges experienced by school personnel included (1) understanding students’ needs before they received a diagnosis and before school personnel received information from healthcare providers and (2) maintaining the teacher–student relationship and (3) the continuity of teaching. In terms of measures for better management, early problematization of school absence, interdisciplinary collaboration on early measures, ensuring the maintenance of the teacher–student relationship and increasing CFS/ME-related competence in schools were proposed. These measures could contribute to prevent loss of function and school absence among young people with CFS/ME.


Conclusion


HRQoL among young people with CFS/ME was associated with contact with school and teachers, but a causal relationship could not be proven. Interviews with young people with CFS/ME and school personnel suggested that interdisciplinary strategies for early adaptations to education and social life at school for young people with CFS/ME may benefit education and social development among peers for young people with CFS/ME. Lack of educational and social adaptations at school might lead to loss of education, social life and development among peers.

Sammendrag


Bakgrunn


Kronisk utmattelsessyndrom/myalgisk encefalopati (CFS/ME) er en sykdom som begrenser aktivitetsnivået til de som rammes i betydelig grad. Både fysisk aktivitet, skolegang, arbeidsliv og sosialt liv påvirkes. Høyt skolefravær blant ungdom med CFS/ME gjør at de mister viktig lærdom og utvikling sammen med jevnaldrende. Framtiden til disse ungdommene blir usikker, og personlige og samfunnsøkonomiske konsekvenser kan være at de risikerer å bli uføre i ung alder. Målinger av helserelatert livskvalitet og skolefunksjon har vist at ungdom med CFS/ME scorer lavere enn andre ungdommer.


Hensikt


Hovedhensikten med dette prosjektet var å undersøke helserelatert livskvalitet blant ungdom med CFS/ME, og samtidig undersøke faktorer i skole og hverdagsliv som kunne være assosiert med helserelatert livskvalitet. I første studie ble helserelatert livskvalitet og assosierte faktorer undersøkt i en kohort av ungdom med CFS/ME. I Studie 2 ble funn fra Studie 1 og tidligere litteratur brukt som utgangspunkt for tema i en fordypnings studie som undersøkte erfaringer blant ungdom med CFS/ME i forhold til skole og hverdagsliv. På bakgrunn av funn fra de to første studiene ble det planlagt en tredje studie som undersøkte lærere, rådgivere og helsesykepleieres erfaringer med å legge til rette skolehverdagen for ungdom med CFS/ME.


Metode


For å undersøke helserelatert livskvalitet og assosierte faktorer blant ungdom med CFS/ME (Studie 1 & 2), ble det gjennomført en tverrsnittsstudie med spørreskjema, og en intervjustudie. Deltagere fra tverrsnittsstudien ble rekruttert til å delta i intervjustudien. For å undersøke erfaringer med å legge til rette skolehverdagen for ungdom med CFS/ME (Studie 3) ble det gjennomført en intervjustudie med deltagere rekruttert blant personale i ungdomsskole, videregående skole, pedagogisk-psykologisk tjeneste (PPT) og skolehelsetjeneste.


Resultat


Totalt ble 63 deltagere inkludert i tverrsnittsstudien, og 18 av disse deltok i intervjustudien. I intervjustudien med lærere, rådgivere og helsesykepleiere ble 12 deltagere inkludert. I tverrsnittsstudien (Studie 1) skåret ungdom med CFS/ME lavere på livskvalitet enn friske og ungdom med andre kroniske sykdommer. Kontakt med skole og lærere var assosiert med høyere livskvalitet blant ungdom med CFS/ME. Denne assossiasjonen kunne enten skyldes mer kontakt på grunn av tilrettelegging av utdanning og sosialt liv i skolen, eller at færre helseproblemer fra CFS/ME gjorde det mulig for ungdommene å opprettholde kontakten med skole og lærere. I Studie 2 ble det funnet at en tilrettelagt plan for undervisning og sosialt liv i skolen kunne bidra til å øke muligheten for å fortsette skolegangen sammen med jevnaldrende. Mangel på en tilrettelagt plan for skolegang og sosialt liv, kunne føre til høyere skolefravær og tap av lærdom, sosial kontakt og utvikling sammen med jevnaldrende. Dette igjen kunne føre til bekymring for framtida og depressive tanker. I Studie 3 hadde lærere, rådgivere og helsesykepleiere erfart at ungdom med CFS/ME mistet tillit til skolen. De hadde erfart at det var utfordrende å forstå elevens behov før elevene fikk en diagnose og før lærere, rådgivere og helsesykepleiere fikk informasjon fra helsetjenesten om tilrettelegging av undervisning og sosialt liv i skolen. Andre utfordringer var å opprettholde lærer-elevrelasjonen og kontinuiteten i undervisningen. Som tiltak for å forbedre håndteringen av ungdom med CFS/ME i skolen foreslo lærere, rådgivere og helsesykepleiere følgende; å problematisere skolefravær tidlig, ha et tverrfaglig samarbeid rundt tidlige tiltak, sikre opprettholdelse av lærer-elev relasjonen og øke kompetansen om CFS/ME i skolen. Dette kunne bidra til å forebygge funksjonstap og skolefravær blant elever med CFS/ME.


Konklusjon


Helserelatert livskvalitet blant ungdom med CFS/ME var assosiert med kontakt med skole og lærere, men en årsakssammenheng kunne ikke bevises. Intervju med ungdom med CFS/ME, skolepersonell og helsesykepleiere antyder at tverrfaglige strategier for tidlig tilrettelegging av undervisning og sosialt liv i skolen kan være nyttig for utdanning og sosial utvikling sammen med jevnaldrende for ungdom med CFS/ME. Manglende tilrettelegging av undervisning og sosialt liv i skolen kan føre til tap av utdanning og sosial utvikling sammen med jevnaldrende.

Has parts
Paper 1:Similä, Wenche Ann; Halsteinli, Vidar; Helland, Ingrid B; Suvatne, Christer; Elmi, Hanna; Rø, Torstein Baade. Health-related quality of life in Norwegian adolescent living with chronic fatigue syndrome. Health and Quality of Life Outcomes 2020 (18) :170. https://doi.org/10.1186/s12955-020-01430-z This article is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0)

Paper 2: Similä, Wenche Ann; Nøst, Torunn Hatlen; Helland, Ingrid B; Rø, Torstein Baade. Factors related to educational adaptations and social life at school experienced by young people with CFS/ME: a qualitative study. BMJ Open 2021 ;Volum 11.(11) s. 1-9 http://dx.doi.org/10.1136/bmjopen-2021-051094 his is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license

Paper 3: Similä, Wenche Ann; Rø, Torstein Baade; Nøst, Torunn Hatlen. Experiences among school personnel and school nurses on educational adaptations for students with CFS/ME: A qualitative interview study. Frontiers in pediatrics 2021 https://doi.org/10.3389/fped.2021.756963 This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY).
Publisher
NTNU
Series
Doctoral theses at NTNU;2022:113

 

Thirty five years ago one of my closest friends caught glandular fever while at university and did not recover quickly. The advice from her GP (who was approaching retirement at that time - so perhaps of a generation to have qualified shortly after WW2) was to take a year off university, rest and moderate her diet until she felt fully recovered. The aim of moderating her diet was to 'protect her liver' and meant no red meat, no dairy, no wheat, no alcohol and no sugar. She did fully recover and has not suffered consequences since, though she never drinks spirits which, since having glandular fever, make her feel sick.

An older generation of GPs seem to have had a more realistic view of the need for convalescence.

 

This is tough, the decisions to defer at university are not necessarily perceived the same as decisions to drop out of school.

When you are a child/teenager, the idea that you're just going to drop out for a year or two and rarely see your friends, have to catch back up at an older age etc seems devastating. Whereas at university, students may have friends outside of their university and mature age study is not unusual.

I don't know whether homeschooling would be any better (for me). My mother actually had a Diploma of Education (though was not working as a teacher), was more than capable of doing calculus etc so it could have worked, but I'm not sure it would have made much difference as there were times that I was just too ill regardless.

 

This

 

Trying a part time timetable made my daughter much worse. Part time isn't joined up enough and little things like not knowing where to sit in a classroom when you haven't been there for weeks seem to be little thought about but carry huge importance for kids.
The onus is to make part time full time and most kids desperately want to be better. They are encouraged to push themselves.

I do hope that the expansion of digital learning over the past couple of years can make a difference.

Attendance is a key performance indicator for schools so not attending was not an allowable option ( until it even home tutors became impossible)

Homeschooling here just attracts social services, though off rolling ( kicking you out of school if there are not resources to help , or you are not deemed " worthy" enough) ls on the increase . Catch 22.

 

That was my experience too, part time doesn't work because of the pacing of the work and you just want to get better so things go back to normal, but you can't.