Measuring quality of life and fatigue in adolescents with chronic fatigue syndrome: estimates of feasibility, internal consistency and parent–adolescent agreement of the PedsQLTM

S. J. Knight, A. Harvey, S. Hennel, L. Lubitz, K. Rowe, C. Reveley, N. Dean, C. Clarke, A. Scheinberg

Research output: Contribution to journalArticleResearchpeer-review

Abstract

The aim of this study was to investigate the psychometric properties of the Paediatric Quality of Life Inventory (PedsQLTM) in measuring health-related quality of life (HRQOL) and fatigue in adolescents with chronic fatigue syndrome (CFS), using both adolescent-reported and caregiver proxy ratings. Eighty-four participants (42 adolescents and 42 parent proxies) recruited consecutively through CFS specialist clinics at a tertiary paediatric hospital completed the PedsQLTM Core Generic Module (CGM) and Multidimensional Fatigue Scale (MFS). Overall, feasibility, floor/ceiling effects and internal consistency were found to be acceptable for the PedsQLTM CGM and the MFS according to predetermined criteria. For parent–adolescent agreement, intra-class correlations between adolescent and parent report on the PedsQLTM CGM and MFS were statistically significant and rated as ‘fair’ (range 0.45–0.68). At a group level, statistically significant discrepancies between mean adolescent and parent scores for the PedsQLTM CGM were noted on all scales (except school functioning). On the MFS, there were no significant differences between parent and adolescent mean scores. Bland–Altman plots revealed significant variability in the discrepancies between parent and adolescent reports on the PedsQLTM CGM and MFS. Based on the psychometric properties assessment, findings of this study suggest that the parent and adolescent PedsQLTM CGM and MFS are promising scales for use in adolescents with CFS. Parent and adolescent reports offer unique perspectives on HRQOL and fatigue in adolescents with CFS and ideally, reports should be sought from both parties.
Original languageEnglish
Pages (from-to)220-234
Number of pages15
JournalFatigue
Volume3
Issue number4
DOIs
Publication statusPublished - 7 Oct 2015

Cite this

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title = "Measuring quality of life and fatigue in adolescents with chronic fatigue syndrome: estimates of feasibility, internal consistency and parent–adolescent agreement of the PedsQLTM",
abstract = "The aim of this study was to investigate the psychometric properties of the Paediatric Quality of Life Inventory (PedsQLTM) in measuring health-related quality of life (HRQOL) and fatigue in adolescents with chronic fatigue syndrome (CFS), using both adolescent-reported and caregiver proxy ratings. Eighty-four participants (42 adolescents and 42 parent proxies) recruited consecutively through CFS specialist clinics at a tertiary paediatric hospital completed the PedsQLTM Core Generic Module (CGM) and Multidimensional Fatigue Scale (MFS). Overall, feasibility, floor/ceiling effects and internal consistency were found to be acceptable for the PedsQLTM CGM and the MFS according to predetermined criteria. For parent–adolescent agreement, intra-class correlations between adolescent and parent report on the PedsQLTM CGM and MFS were statistically significant and rated as ‘fair’ (range 0.45–0.68). At a group level, statistically significant discrepancies between mean adolescent and parent scores for the PedsQLTM CGM were noted on all scales (except school functioning). On the MFS, there were no significant differences between parent and adolescent mean scores. Bland–Altman plots revealed significant variability in the discrepancies between parent and adolescent reports on the PedsQLTM CGM and MFS. Based on the psychometric properties assessment, findings of this study suggest that the parent and adolescent PedsQLTM CGM and MFS are promising scales for use in adolescents with CFS. Parent and adolescent reports offer unique perspectives on HRQOL and fatigue in adolescents with CFS and ideally, reports should be sought from both parties.",
author = "Knight, {S. J.} and A. Harvey and S. Hennel and L. Lubitz and K. Rowe and C. Reveley and N. Dean and C. Clarke and A. Scheinberg",
year = "2015",
month = "10",
day = "7",
doi = "10.1080/21641846.2015.1090816",
language = "English",
volume = "3",
pages = "220--234",
journal = "Fatigue",
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Measuring quality of life and fatigue in adolescents with chronic fatigue syndrome : estimates of feasibility, internal consistency and parent–adolescent agreement of the PedsQLTM. / Knight, S. J.; Harvey, A.; Hennel, S.; Lubitz, L.; Rowe, K.; Reveley, C.; Dean, N.; Clarke, C.; Scheinberg, A.

In: Fatigue, Vol. 3, No. 4, 07.10.2015, p. 220-234.

Research output: Contribution to journalArticleResearchpeer-review

TY - JOUR

T1 - Measuring quality of life and fatigue in adolescents with chronic fatigue syndrome

T2 - estimates of feasibility, internal consistency and parent–adolescent agreement of the PedsQLTM

AU - Knight, S. J.

AU - Harvey, A.

AU - Hennel, S.

AU - Lubitz, L.

AU - Rowe, K.

AU - Reveley, C.

AU - Dean, N.

AU - Clarke, C.

AU - Scheinberg, A.

PY - 2015/10/7

Y1 - 2015/10/7

N2 - The aim of this study was to investigate the psychometric properties of the Paediatric Quality of Life Inventory (PedsQLTM) in measuring health-related quality of life (HRQOL) and fatigue in adolescents with chronic fatigue syndrome (CFS), using both adolescent-reported and caregiver proxy ratings. Eighty-four participants (42 adolescents and 42 parent proxies) recruited consecutively through CFS specialist clinics at a tertiary paediatric hospital completed the PedsQLTM Core Generic Module (CGM) and Multidimensional Fatigue Scale (MFS). Overall, feasibility, floor/ceiling effects and internal consistency were found to be acceptable for the PedsQLTM CGM and the MFS according to predetermined criteria. For parent–adolescent agreement, intra-class correlations between adolescent and parent report on the PedsQLTM CGM and MFS were statistically significant and rated as ‘fair’ (range 0.45–0.68). At a group level, statistically significant discrepancies between mean adolescent and parent scores for the PedsQLTM CGM were noted on all scales (except school functioning). On the MFS, there were no significant differences between parent and adolescent mean scores. Bland–Altman plots revealed significant variability in the discrepancies between parent and adolescent reports on the PedsQLTM CGM and MFS. Based on the psychometric properties assessment, findings of this study suggest that the parent and adolescent PedsQLTM CGM and MFS are promising scales for use in adolescents with CFS. Parent and adolescent reports offer unique perspectives on HRQOL and fatigue in adolescents with CFS and ideally, reports should be sought from both parties.

AB - The aim of this study was to investigate the psychometric properties of the Paediatric Quality of Life Inventory (PedsQLTM) in measuring health-related quality of life (HRQOL) and fatigue in adolescents with chronic fatigue syndrome (CFS), using both adolescent-reported and caregiver proxy ratings. Eighty-four participants (42 adolescents and 42 parent proxies) recruited consecutively through CFS specialist clinics at a tertiary paediatric hospital completed the PedsQLTM Core Generic Module (CGM) and Multidimensional Fatigue Scale (MFS). Overall, feasibility, floor/ceiling effects and internal consistency were found to be acceptable for the PedsQLTM CGM and the MFS according to predetermined criteria. For parent–adolescent agreement, intra-class correlations between adolescent and parent report on the PedsQLTM CGM and MFS were statistically significant and rated as ‘fair’ (range 0.45–0.68). At a group level, statistically significant discrepancies between mean adolescent and parent scores for the PedsQLTM CGM were noted on all scales (except school functioning). On the MFS, there were no significant differences between parent and adolescent mean scores. Bland–Altman plots revealed significant variability in the discrepancies between parent and adolescent reports on the PedsQLTM CGM and MFS. Based on the psychometric properties assessment, findings of this study suggest that the parent and adolescent PedsQLTM CGM and MFS are promising scales for use in adolescents with CFS. Parent and adolescent reports offer unique perspectives on HRQOL and fatigue in adolescents with CFS and ideally, reports should be sought from both parties.

U2 - 10.1080/21641846.2015.1090816

DO - 10.1080/21641846.2015.1090816

M3 - Article

VL - 3

SP - 220

EP - 234

JO - Fatigue

JF - Fatigue

SN - 2164-1846

IS - 4

ER -