Monitoring patients with juvenile idiopathic arthritis using health-related quality of life

Martijn J.H. Doeleman; Sytze de Roock; Nathan Buijsse; Mark Klein; Gouke J. Bonsel; Vicki Seyfert-Margolis; Joost F. Swart; Nico M. Wulffraat

doi:10.1186/s12969-021-00527-z

Monitoring patients with juvenile idiopathic arthritis using health-related quality of life

Martijn J.H. Doeleman^*, Sytze de Roock, Nathan Buijsse, Mark Klein, Gouke J. Bonsel, Vicki Seyfert-Margolis, Joost F. Swart, Nico M. Wulffraat

^*Corresponding author for this work

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Abstract

Background: Pediatric patients with juvenile idiopathic arthritis (JIA) are at risk for a lower health-related quality of life compared to their healthy peers. Remote monitoring of health-related quality of life using electronic patient-reported outcomes could provide important information to treating physicians. The aim of this study was to investigate if self-assessment with the EuroQol five-dimensional ‘youth’ questionnaire with five levels (EQ-5D-Y-5 L) inside a mobile E-health application could identify JIA patients in need of possible treatment adjustments. Methods: The EQ-5D-Y-5 L was completed via a mobile application (Reuma2Go) between October 2017 and January 2019. The clinical juvenile arthritis disease activity score with 71 joint count (cJADAS-71) was reported at every corresponding visit as reference for disease activity. Previously described cJADAS-71 thresholds were used to identify patients in possible need of treatment adjustments. Discriminatory power of the EQ-5D-Y-5 L was assessed by ROC-curves and diagnostic characteristics. Results: Sixty-eight JIA patients completed the EQ-5D-Y-5 L questionnaire. Median cJADAS-71 indicated low disease activity overall in the studied population. ROC curves and diagnostic characteristics demonstrated that self-assessment with the EQ-5D-Y-5 L could distinguish between patients with inactive disease (or minimal disease activity) and moderate to high disease activity with good accuracy (87%), sensitivity (85%), specificity (89%) and negative predictive value (86%). Conclusions: Results demonstrate that the EQ-5D-Y-5 L was able to identify JIA patients in need of possible treatment adjustments in our studied population. Remote monitoring of health-related quality of life and patient-reported outcomes via E-health applications could provide important additional information to determine the frequency of clinical visits, assess therapeutic efficacy and guide treat-to-target strategies in pediatric patients with JIA.

Original language	English
Article number	40
Pages (from-to)	40
Journal	Pediatric Rheumatology
Volume	19
Issue number	1
DOIs	https://doi.org/10.1186/s12969-021-00527-z
Publication status	Published - 22 Mar 2021

Keywords

Adolescent
Arthritis, Juvenile/diagnosis
Child
Diagnostic Self Evaluation
Female
Humans
Male
Mobile Applications
Monitoring, Ambulatory/methods
Quality of Life
Retrospective Studies

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@article{0e4d60daef6e4acbb9d69422dda9ec13,

title = "Monitoring patients with juvenile idiopathic arthritis using health-related quality of life",

abstract = "Background: Pediatric patients with juvenile idiopathic arthritis (JIA) are at risk for a lower health-related quality of life compared to their healthy peers. Remote monitoring of health-related quality of life using electronic patient-reported outcomes could provide important information to treating physicians. The aim of this study was to investigate if self-assessment with the EuroQol five-dimensional {\textquoteleft}youth{\textquoteright} questionnaire with five levels (EQ-5D-Y-5 L) inside a mobile E-health application could identify JIA patients in need of possible treatment adjustments. Methods: The EQ-5D-Y-5 L was completed via a mobile application (Reuma2Go) between October 2017 and January 2019. The clinical juvenile arthritis disease activity score with 71 joint count (cJADAS-71) was reported at every corresponding visit as reference for disease activity. Previously described cJADAS-71 thresholds were used to identify patients in possible need of treatment adjustments. Discriminatory power of the EQ-5D-Y-5 L was assessed by ROC-curves and diagnostic characteristics. Results: Sixty-eight JIA patients completed the EQ-5D-Y-5 L questionnaire. Median cJADAS-71 indicated low disease activity overall in the studied population. ROC curves and diagnostic characteristics demonstrated that self-assessment with the EQ-5D-Y-5 L could distinguish between patients with inactive disease (or minimal disease activity) and moderate to high disease activity with good accuracy (87%), sensitivity (85%), specificity (89%) and negative predictive value (86%). Conclusions: Results demonstrate that the EQ-5D-Y-5 L was able to identify JIA patients in need of possible treatment adjustments in our studied population. Remote monitoring of health-related quality of life and patient-reported outcomes via E-health applications could provide important additional information to determine the frequency of clinical visits, assess therapeutic efficacy and guide treat-to-target strategies in pediatric patients with JIA.",

keywords = "Adolescent, Arthritis, Juvenile/diagnosis, Child, Diagnostic Self Evaluation, Female, Humans, Male, Mobile Applications, Monitoring, Ambulatory/methods, Quality of Life, Retrospective Studies",

author = "Doeleman, {Martijn J.H.} and {de Roock}, Sytze and Nathan Buijsse and Mark Klein and Bonsel, {Gouke J.} and Vicki Seyfert-Margolis and Swart, {Joost F.} and Wulffraat, {Nico M.}",

note = "Funding Information: The EQ-5D-Y-5?L is a copyrighted instrument, which can be obtained from the EuroQol Research Foundation by registering at their website www.euroqol.org. No license fee will be charged for non-commercial use. Reuma2Go is a copyrighted mobile application and accompanying web-based portal was built on the MyOwnMed, Inc., platform (Bethesda, USA) MyOwnMed, Inc. Funding Information: This work was supported by longstanding research support from the Dutch Arthritis Foundation (ReumaNederland), grant number LLP10. Publisher Copyright: {\textcopyright} 2021, The Author(s).",

year = "2021",

month = mar,

day = "22",

doi = "10.1186/s12969-021-00527-z",

language = "English",

volume = "19",

pages = "40",

journal = "Pediatric Rheumatology",

issn = "1546-0096",

publisher = "BioMed Central Ltd.",

number = "1",

}

TY - JOUR

T1 - Monitoring patients with juvenile idiopathic arthritis using health-related quality of life

AU - Doeleman, Martijn J.H.

AU - de Roock, Sytze

AU - Buijsse, Nathan

AU - Klein, Mark

AU - Bonsel, Gouke J.

AU - Seyfert-Margolis, Vicki

AU - Swart, Joost F.

AU - Wulffraat, Nico M.

N1 - Funding Information: The EQ-5D-Y-5?L is a copyrighted instrument, which can be obtained from the EuroQol Research Foundation by registering at their website www.euroqol.org. No license fee will be charged for non-commercial use. Reuma2Go is a copyrighted mobile application and accompanying web-based portal was built on the MyOwnMed, Inc., platform (Bethesda, USA) MyOwnMed, Inc. Funding Information: This work was supported by longstanding research support from the Dutch Arthritis Foundation (ReumaNederland), grant number LLP10. Publisher Copyright: © 2021, The Author(s).

PY - 2021/3/22

Y1 - 2021/3/22

N2 - Background: Pediatric patients with juvenile idiopathic arthritis (JIA) are at risk for a lower health-related quality of life compared to their healthy peers. Remote monitoring of health-related quality of life using electronic patient-reported outcomes could provide important information to treating physicians. The aim of this study was to investigate if self-assessment with the EuroQol five-dimensional ‘youth’ questionnaire with five levels (EQ-5D-Y-5 L) inside a mobile E-health application could identify JIA patients in need of possible treatment adjustments. Methods: The EQ-5D-Y-5 L was completed via a mobile application (Reuma2Go) between October 2017 and January 2019. The clinical juvenile arthritis disease activity score with 71 joint count (cJADAS-71) was reported at every corresponding visit as reference for disease activity. Previously described cJADAS-71 thresholds were used to identify patients in possible need of treatment adjustments. Discriminatory power of the EQ-5D-Y-5 L was assessed by ROC-curves and diagnostic characteristics. Results: Sixty-eight JIA patients completed the EQ-5D-Y-5 L questionnaire. Median cJADAS-71 indicated low disease activity overall in the studied population. ROC curves and diagnostic characteristics demonstrated that self-assessment with the EQ-5D-Y-5 L could distinguish between patients with inactive disease (or minimal disease activity) and moderate to high disease activity with good accuracy (87%), sensitivity (85%), specificity (89%) and negative predictive value (86%). Conclusions: Results demonstrate that the EQ-5D-Y-5 L was able to identify JIA patients in need of possible treatment adjustments in our studied population. Remote monitoring of health-related quality of life and patient-reported outcomes via E-health applications could provide important additional information to determine the frequency of clinical visits, assess therapeutic efficacy and guide treat-to-target strategies in pediatric patients with JIA.

AB - Background: Pediatric patients with juvenile idiopathic arthritis (JIA) are at risk for a lower health-related quality of life compared to their healthy peers. Remote monitoring of health-related quality of life using electronic patient-reported outcomes could provide important information to treating physicians. The aim of this study was to investigate if self-assessment with the EuroQol five-dimensional ‘youth’ questionnaire with five levels (EQ-5D-Y-5 L) inside a mobile E-health application could identify JIA patients in need of possible treatment adjustments. Methods: The EQ-5D-Y-5 L was completed via a mobile application (Reuma2Go) between October 2017 and January 2019. The clinical juvenile arthritis disease activity score with 71 joint count (cJADAS-71) was reported at every corresponding visit as reference for disease activity. Previously described cJADAS-71 thresholds were used to identify patients in possible need of treatment adjustments. Discriminatory power of the EQ-5D-Y-5 L was assessed by ROC-curves and diagnostic characteristics. Results: Sixty-eight JIA patients completed the EQ-5D-Y-5 L questionnaire. Median cJADAS-71 indicated low disease activity overall in the studied population. ROC curves and diagnostic characteristics demonstrated that self-assessment with the EQ-5D-Y-5 L could distinguish between patients with inactive disease (or minimal disease activity) and moderate to high disease activity with good accuracy (87%), sensitivity (85%), specificity (89%) and negative predictive value (86%). Conclusions: Results demonstrate that the EQ-5D-Y-5 L was able to identify JIA patients in need of possible treatment adjustments in our studied population. Remote monitoring of health-related quality of life and patient-reported outcomes via E-health applications could provide important additional information to determine the frequency of clinical visits, assess therapeutic efficacy and guide treat-to-target strategies in pediatric patients with JIA.

KW - Adolescent

KW - Arthritis, Juvenile/diagnosis

KW - Child

KW - Diagnostic Self Evaluation

KW - Female

KW - Humans

KW - Male

KW - Mobile Applications

KW - Monitoring, Ambulatory/methods

KW - Quality of Life

KW - Retrospective Studies

UR - http://www.scopus.com/inward/record.url?scp=85103162695&partnerID=8YFLogxK

U2 - 10.1186/s12969-021-00527-z

DO - 10.1186/s12969-021-00527-z

M3 - Article

C2 - 33752695

AN - SCOPUS:85103162695

SN - 1546-0096

VL - 19

SP - 40

JO - Pediatric Rheumatology

JF - Pediatric Rheumatology

IS - 1

M1 - 40

ER -

Monitoring patients with juvenile idiopathic arthritis using health-related quality of life

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