Health related quality of life in adolescents with chronic fatigue syndrome: a cross-sectional study

doi:10.1186/s12955-015-0288-3

Comparative Study

. 2015 Jul 3:13:96.

doi: 10.1186/s12955-015-0288-3.

Health related quality of life in adolescents with chronic fatigue syndrome: a cross-sectional study

Anette Winger¹, Gunnvald Kvarstein², Vegard Bruun Wyller^{3

4

5}, Mirjam Ekstedt^{6

7}, Dag Sulheim^{8

9}, Even Fagermoen¹⁰, Milada Cvancarova Småstuen¹¹, Sølvi Helseth¹²

Affiliations

¹ Institute of Nursing, Faculty of Health Sciences, Oslo and Akershus University College of Applied Sciences, Postboks 4 St. Olavs plass, NO-0130, Oslo, Norway. anette.winger@hioa.no.
² Department of Clinical Medicine, UIT The Arctic University of Norway, Tromso, Norway. gunnvald.kvarstein@uit.no.
³ Institute of Clinical Medicine, Medical Faculty, University of Oslo, Oslo, Norway. brwylle@online.no.
⁴ Department of Pediatrics, Oslo University Hospital, Oslo, Norway. brwylle@online.no.
⁵ Department of Pediatrics, Akershus University Hospital, Lørenskog, Norway. brwylle@online.no.
⁶ KTH, Royal Institute of Technology, School for Technology and Health, Stockholm, Sweden. mirj@kth.se.
⁷ Center for Shared Decision Making and Collaborative Care, Oslo University Hospital, Oslo, Norway. mirj@kth.se.
⁸ Department of Pediatrics, Oslo University Hospital, Oslo, Norway. dag.sulheim@medisin.uio.no.
⁹ Department of Pediatrics, Innlandet Hospital Trust, Lillehammer, Norway. dag.sulheim@medisin.uio.no.
¹⁰ Institute of Clinical Medicine, Medical Faculty, University of Oslo, Oslo, Norway. feef@online.no.
¹¹ Institute of Nursing, Faculty of Health Sciences, Oslo and Akershus University College of Applied Sciences, Postboks 4 St. Olavs plass, NO-0130, Oslo, Norway. Milada-Cvancarova.Smastuen@hioa.no.
¹² Institute of Nursing, Faculty of Health Sciences, Oslo and Akershus University College of Applied Sciences, Postboks 4 St. Olavs plass, NO-0130, Oslo, Norway. solvi.helseth@hioa.no.

PMID: 26138694
PMCID: PMC4490669
DOI: 10.1186/s12955-015-0288-3

Comparative Study

Health related quality of life in adolescents with chronic fatigue syndrome: a cross-sectional study

Anette Winger et al. Health Qual Life Outcomes. 2015.

. 2015 Jul 3:13:96.

doi: 10.1186/s12955-015-0288-3.

Authors

Anette Winger¹, Gunnvald Kvarstein², Vegard Bruun Wyller^{3

4

5}, Mirjam Ekstedt^{6

7}, Dag Sulheim^{8

9}, Even Fagermoen¹⁰, Milada Cvancarova Småstuen¹¹, Sølvi Helseth¹²

Affiliations

¹ Institute of Nursing, Faculty of Health Sciences, Oslo and Akershus University College of Applied Sciences, Postboks 4 St. Olavs plass, NO-0130, Oslo, Norway. anette.winger@hioa.no.
² Department of Clinical Medicine, UIT The Arctic University of Norway, Tromso, Norway. gunnvald.kvarstein@uit.no.
³ Institute of Clinical Medicine, Medical Faculty, University of Oslo, Oslo, Norway. brwylle@online.no.
⁴ Department of Pediatrics, Oslo University Hospital, Oslo, Norway. brwylle@online.no.
⁵ Department of Pediatrics, Akershus University Hospital, Lørenskog, Norway. brwylle@online.no.
⁶ KTH, Royal Institute of Technology, School for Technology and Health, Stockholm, Sweden. mirj@kth.se.
⁷ Center for Shared Decision Making and Collaborative Care, Oslo University Hospital, Oslo, Norway. mirj@kth.se.
⁸ Department of Pediatrics, Oslo University Hospital, Oslo, Norway. dag.sulheim@medisin.uio.no.
⁹ Department of Pediatrics, Innlandet Hospital Trust, Lillehammer, Norway. dag.sulheim@medisin.uio.no.
¹⁰ Institute of Clinical Medicine, Medical Faculty, University of Oslo, Oslo, Norway. feef@online.no.
¹¹ Institute of Nursing, Faculty of Health Sciences, Oslo and Akershus University College of Applied Sciences, Postboks 4 St. Olavs plass, NO-0130, Oslo, Norway. Milada-Cvancarova.Smastuen@hioa.no.
¹² Institute of Nursing, Faculty of Health Sciences, Oslo and Akershus University College of Applied Sciences, Postboks 4 St. Olavs plass, NO-0130, Oslo, Norway. solvi.helseth@hioa.no.

PMID: 26138694
PMCID: PMC4490669
DOI: 10.1186/s12955-015-0288-3

Abstract

Aim: To study health related quality of life (HRQOL) and depressive symptoms in adolescents with chronic fatigue syndrome (CFS) and to investigate in which domains their HRQOL and depressive symptoms differ from those of healthy adolescents.

Background and objective: Several symptoms such as disabling fatigue, pain and depressive symptoms affect different life domains of adolescents with CFS. Compared to adolescents with other chronic diseases, young people with CFS are reported to be severely impaired, both physiologically and mentally. Despite this, few have investigated the HRQOL in this group.

Method: This is a cross-sectional study on HRQOL including 120 adolescents with CFS and 39 healthy controls (HC), between 12 and 18 years. The Pediatric Quality of Life Inventory™, 4.0 (PedsQL) was used to assess HRQOL. The Mood and Feelings Questionnaire assessed depressive symptoms. Data were collected between March 2010 and October 2012 as part of the NorCAPITAL project (Norwegian Study of Chronic Fatigue Syndrome in Adolescents: Pathophysiology and Intervention Trial). Linear and logistic regression models were used in analysis, and all tests were two-sided.

Results: Adolescents with CFS reported significantly lower overall HRQOL compared to HCs. When controlling for gender differences, CFS patients scored 44 points lower overall HRQOL on a scale from 0-100 compared to HCs. The domains with the largest differences were interference with physical health (B = -59, 95 % CI -54 to -65) and school functioning (B = -52, 95 % CI -45 to -58). Both depressive symptoms and being a patient were independently associated with lower levels of HRQOL CONCLUSION: The difference in HRQOL between CFS patients and healthy adolescents was even larger than we expected. The large sample of adolescents with CFS in our study confirms previous findings from smaller studies, and emphasizes that CFS is a seriously disabling condition that has a strong impact on their HRQOL. Even though depressive symptoms were found in the group of patients, they could not statistically explain the poor HRQOL.

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Figures

**Fig. 1**
Health Related Quality of Life among Adolescents with CFS and Healthy Controls. *(Detailed Legend Fig.* 1 ): HRQOL was assessed by the Pediatric Quality of Life Inventory™, 4.0 (PedsQL). Total score and subscales scores are presented by mean values and SD. CFS: N: =114, HCs: N = 34

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References

1. Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med. 1994;121(12):953. doi: 10.7326/0003-4819-121-12-199412150-00009. - DOI - PubMed
1. Royal College of Paediatrics and Child Health . Evidence based guidelines for the management of CFS/ME (chronic fatigue syndrome/myalgic encephalopathy) in children and young adults. London: Royal College of Paediatrics and Child Health 2004; 2004.
1. National Institute of Health and Care Excelence . Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children. 2007.
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1. Rangel L, Garralda ME, Levin M, Roberts H. The course of severe chronic fatigue syndrome in childhood. J R Soc Med. 2000;93(3):129–34. - PMC - PubMed

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[1] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med. 1994;121(12):953. doi: 10.7326/0003-4819-121-12-199412150-00009. - DOI - PubMed

[2] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med. 1994;121(12):953. doi: 10.7326/0003-4819-121-12-199412150-00009. - DOI - PubMed

[3] Royal College of Paediatrics and Child Health . Evidence based guidelines for the management of CFS/ME (chronic fatigue syndrome/myalgic encephalopathy) in children and young adults. London: Royal College of Paediatrics and Child Health 2004; 2004.

[4] Royal College of Paediatrics and Child Health . Evidence based guidelines for the management of CFS/ME (chronic fatigue syndrome/myalgic encephalopathy) in children and young adults. London: Royal College of Paediatrics and Child Health 2004; 2004.

[5] National Institute of Health and Care Excelence . Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children. 2007.

[6] National Institute of Health and Care Excelence . Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children. 2007.

[7] Crawley E, Sterne JA. Association between school absence and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy. Arch Dis Child. 2009;94(10):752–6. doi: 10.1136/adc.2008.143537. - DOI - PubMed

[8] Crawley E, Sterne JA. Association between school absence and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy. Arch Dis Child. 2009;94(10):752–6. doi: 10.1136/adc.2008.143537. - DOI - PubMed

[9] Rangel L, Garralda ME, Levin M, Roberts H. The course of severe chronic fatigue syndrome in childhood. J R Soc Med. 2000;93(3):129–34. - PMC - PubMed

[10] Rangel L, Garralda ME, Levin M, Roberts H. The course of severe chronic fatigue syndrome in childhood. J R Soc Med. 2000;93(3):129–34. - PMC - PubMed

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Health related quality of life in adolescents with chronic fatigue syndrome: a cross-sectional study

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Health related quality of life in adolescents with chronic fatigue syndrome: a cross-sectional study

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