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Health-related quality of life in Norwegian adolescents living with chronic fatigue syndrome.

ABSTRACT: PURPOSE:The primary aim was to measure health related quality of life (HRQoL) in a Norwegian cohort of adolescents with Chronic Fatigue Syndrome (CFS/ME). A secondary aim was to identify factors before diagnosis, at time of diagnosis and after diagnosis that were associated with HRQoL. METHODS:In this cross-sectional population-based study, HRQoL was measured by Pediatric Quality of Life Inventory™ Generic Core scale version 4.0 (PedsQL4.0) in 63 adolescents with CFS/ME. In addition, fatigue was measured by PedsQL Multidimensional Fatigue scale (PedsQL-MFS), depressive symptoms were measured by the Short Mood and Feelings Questionnaire (SMFQ), and disruption in school activities was measured by The De Paul Pediatric Health Questionnaire (DPHQ-N). Data were also collected from medical records and patient interviews. RESULTS:Age at diagnosis was 15 (2) years (mean (SD)), and four out of five participants were female. Time from diagnosis to reply was 39 (22) months. Adolescents with CFS/ME reported PedsQL4.0 score 50 (17), and boys reported a better score than girls (64 vs 47, 95% Confidence Interval (CI) for difference (-?27; -?6)). There were positive associations between overall HRQoL and support from a schoolteacher, school attendance or participation in leisure activities. There were negative associations between overall HRQoL and delayed school progression, having been to rehabilitation stay and depressive symptoms. CONCLUSION:HRQoL in adolescents diagnosed with CFS/ME was low. The associations between reported HRQoL, healthcare previously provided, support from a schoolteacher, school attendance and participation in leisure activity may provide information of value when developing refined strategies for healthcare among adolescents with CFS/ME. Possible causal relationships must however be explored in future studies.

SUBMITTER: Simila WA

PROVIDER: S-EPMC7275299 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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Health-related quality of life in Norwegian adolescents living with chronic fatigue syndrome.

Similä Wenche Ann WA Halsteinli Vidar V Helland Ingrid B IB Suvatne Christer C Elmi Hanna H Rø Torstein Baade TB

Health and quality of life outcomes 20200605 1

<h4>Purpose</h4>The primary aim was to measure health related quality of life (HRQoL) in a Norwegian cohort of adolescents with Chronic Fatigue Syndrome (CFS/ME). A secondary aim was to identify factors before diagnosis, at time of diagnosis and after diagnosis that were associated with HRQoL.<h4>Methods</h4>In this cross-sectional population-based study, HRQoL was measured by Pediatric Quality of Life Inventory™ Generic Core scale version 4.0 (PedsQL4.0) in 63 adolescents with CFS/ME. In additi ...[more]

PMID: 32503553

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Project description:AimTo 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 objectiveSeveral 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.MethodThis 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.ResultsAdolescents 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.

Project description:IntroductionMyalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a common, severe condition affecting 0.2 to 0.4 per cent of the population. Even so, no recent international EQ-5D based health-related quality of life (HRQoL) estimates exist for ME/CFS patients. The main purpose of this study was to estimate HRQoL scores using the EQ-5D-3L with Danish time trade-off tariffs. Secondary, the aims were to explore whether the results are not influenced by other conditions using regression, to compare the estimates to 20 other conditions and finally to present ME/CFS patient characteristics for use in clinical practice.Material and methodsAll members of the Danish ME/CFS Patient Association in 2013 (n=319) were asked to fill out a questionnaire including the EQ-5D-3L. From these, 105 ME/CFS patients were identified and gave valid responses. Unadjusted EQ-5D-3L means were calculated and compared to the population mean as well as to the mean of 20 other conditions. Furthermore, adjusted estimates were calculated using ordinary least squares (OLS) regression, adjusting for gender, age, education, and co-morbidity of 18 self-reported conditions. Data from the North Denmark Health Profile 2010 was used as population reference in the regression analysis (n=23,392).ResultsThe unadjusted EQ-5D-3L mean of ME/CFS was 0.47 [0.41-0.53] compared to a population mean of 0.85 [0.84-0.86]. The OLS regression estimated a disutility of -0.29 [-0.21;-0.34] for ME/CFS patients in this study. The characteristics of ME/CFS patients are different from the population with respect to gender, relationship, employment etc.ConclusionThe EQ-5D-3L-based HRQoL of ME/CFS is significantly lower than the population mean and the lowest of all the compared conditions. The adjusted analysis confirms that poor HRQoL of ME/CFS is distinctly different from and not a proxy of the other included conditions. However, further studies are needed to exclude the possible selection bias of the current study.

Project description:BackgroundAutonomy is recognized as important for individual well-being and constitutes one dimension in the KIDSCREEN-instrument measuring health related quality of life (HRQoL) in children and adolescents. However, the autonomy questions in KIDSCREEN are restricted to opportunities to influence leisure time activities, which is a form of autonomy as volition. Yet, there are other aspects of autonomy that might be related to adolescent's HRQoL. The aims of the present study were first to investigate the psychometric properties of a scale measuring autonomy in adolescence from a control perspective (AAC) including its relation to the autonomy dimension in KIDSCREEN, and second; to investigate AACs ability to predict each of the 10 dimensions constituting KIDSCREEN.MethodsStudents (n = 154) aged 15-16 years who were recruited from schools located in both low (two schools) and high (two schools) socioeconomic status (SES) areas in Sweden participated in a cross-sectional study. The adolescents answered a questionnaire including a new 6-item scale measuring perceived autonomy and HRQoL assessed by the KIDSCREEN-52 instrument. A factor analyses was computed to investigate the relation between the items in the AAC scale and the autonomy items in the KIDSCREEN instrument. Hierarchical regression analyses were computed to investigate if the AAC scale predicted HRQoL in any of the 10 dimensions in KIDSCREEN after controlling for gender, SES and the original autonomy scale included in KIDSCREEN.ResultsThe factor analysis showed that all the items from the autonomy scale loaded in one factor and that all the items from the AAC scale loaded in another dimension. The hierarchical regression models showed that the AAC scale uniquely predicted HRQoL in all dimensions of the KIDSCREEN instrument after controlling for gender, SES and the original autonomy scale included in KIDSCREEN-52. A high level of perceived autonomy was associated with a high level of HRQoL for both scales.ConclusionA new scale for measuring autonomy from a control perspective has been presented and shown to differ from autonomy as volition. Both forms of autonomy are positively related to HRQoL in adolescence 15-16 years old.

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Health-related quality of life in Norwegian adolescents living with chronic fatigue syndrome.

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Health-related quality of life in Norwegian adolescents living with chronic fatigue syndrome.

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