Shenoi, S., Horneff, G., Cidon, M., Ramanan, A. V., Kimura, Y., Quartier, P., Foeldvari, I., Zeft, A., Lomax, K. G., Gregson, J., Abma, T., Campbell-Hill, S., Weiss, J., Patel, D., Marinsek, N. and Wulffraat, N. (2018). The burden of systemic juvenile idiopathic arthritis for patients and caregivers: an international survey and retrospective chart review. Clin. Exp. Rheumatol., 36 (5). S. 920 - 929. PISA: CLINICAL & EXPER RHEUMATOLOGY. ISSN 1593-098X

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Abstract

Objective To investigate the burden of systemic juvenile idiopathic arthritis (SJIA) on health-related quality of life (HRQOL) and resource use of patients and caregivers (families) on biologic therapy. Methods This international study assessed SJIA burden in patients on biologics, using a caregiver questionnaire and retrospective chart review. Validated measures included: Child Health Questionnaire Parent-Form 50 (CHQ-PF50), 36-Item Short-Form Health Survey (SF-36v2) and Work Productivity and Activity Impairment questionnaire: Specific Health Problem (WPAI:SHP). Caregivers completed function, treatment satisfaction and resource utilisation questions. Results Sixty-one biologic treated patients participated (12 anakinra, 25 canakinumab, 24 tocilizumab). Mean age at diagnosis and survey completion was 6.4 and 11.3 years, respectively. Mean (+/- SD: standard deviation) CHQ-PF50 physical (PhS) and psychosocial (PsS) summary scores were significantly lower in SJIA patients than a normative population (PhS: 40.0 +/- 18.2 vs. 53.0 +/- 8.8; PsS: 46.6 +/- 11.3 vs. 51.2 +/- 9.1) as was caregivers' mean SF-36v2 mental component score (MCS; 46.2 +/- 10.7 vs. 50.0 +/- 10). Assistive devices were required by 54%; 20% required home/car alterations. According to caregivers, biologic treatment completely improved SJIA symptoms in 48% on canakinumab or tocilizumab and 32% on anakinra. Over 2 months, patients missed 2.9 school days due to SJIA (10% yearly loss). Caregivers lost 25 work days annually and 27.5 days of productivity (WPAI-SHP: mean absenteeism 10%; presenteeism 11%). Yearly SJIA travel/treatment costs averaged $1,130. Conclusion SJIA patients on biologic therapy experience HRQOL impairment, caregivers' mental well-being suffers and productivity losses and expenses are incurred. Therapeutic interventions that reduce the burden of SJIA are required.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Shenoi, S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Horneff, G.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Cidon, M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ramanan, A. V.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kimura, Y.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Quartier, P.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Foeldvari, I.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Zeft, A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Lomax, K. G.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Gregson, J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Abma, T.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Campbell-Hill, S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Weiss, J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Patel, D.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Marinsek, N.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Wulffraat, N.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-174349
Journal or Publication Title: Clin. Exp. Rheumatol.
Volume: 36
Number: 5
Page Range: S. 920 - 929
Date: 2018
Publisher: CLINICAL & EXPER RHEUMATOLOGY
Place of Publication: PISA
ISSN: 1593-098X
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
QUALITY-OF-LIFE; INTERLEUKIN-1 RECEPTOR ANTAGONIST; RHEUMATOID-ARTHRITIS; ACTIVITY IMPAIRMENT; WORK PRODUCTIVITY; RANDOMIZED-TRIAL; HEALTH-STATUS; COHORT; ADOLESCENTS; CHILDRENMultiple languages
RheumatologyMultiple languages
Refereed: Yes
URI: http://kups.ub.uni-koeln.de/id/eprint/17434

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