Main Article Content
Background. The problem of the quality of life (QoL) is relevant nowadays, especially for patients with chronic diseases, including juvenile idiopathic arthritis (JIA) and the subtype of JIA associated with uveitis (JIA-u). The purpose was to carry out a literature review on the QoL in children with JIA and JIA-u, with an analysis of existing tools, the possibility of their use in children, and to assess the QoL indicators of children with JIA, who were treated in a specialized department of the hospital. Materials and methods. The search was performed in the PubMed, Medline, and Google databases using the keywords: JIA, rheumatoid arthritis, uveitis, JIA-u, arthritis with uveitis, QoL, QoL in children. Inclusion criteria were as follows: publication after 2010, use of questionnaires to assess QoL, the sample of patients over 30 people. The type of instrument for assessing QoL, the sample nature, and the QoL indicators of patients were analyzed. The study was carried out at the premises of the State Institution “Institute for Children and Adolescents Health Care of the National Academy of Medical Sciences of Ukraine” and involved 41 children with JIA (22 with polyarticular, and 19 with oligoarticular variants): 25 girls and 16 boys aged 3–17 years with disease duration of 40.2 ± 6.2 months. Thirty-six of them received methotrexate, and 5 — sulfasalazine. The disease activity was assessed by the Juvenile Arthritis Disease Activity Score (JADAS27) and the functional state — by the Childhood Health Assessment Questionnaire (CHAQ). For quality of life assessment, the Pediatric Quality of Life InventoryTM validated for Ukraine was used. Results. The analysis included 73 foreign scientific papers from 2011 to 2021, among which 11 are fully devoted to the assessment of QoL in children with JIA, and 62 partially cover this topic in children and adults with arthritis. In Ukraine, these issues are not discussed enough (6 articles on the evaluation of QoL in children), the factors for its deterioration remain unclear. The level of activity according to JADAS27 in children in subgroups with both poly- and oligoarticular variants was high (11.20 ± 7.04 and 8.9 ± 4.2 points), and the functional state (on CHAQ) — 0.19 ± 0.17. In children with JIA, QoL indicators are reduced, especially on the scales of emotional and school functioning, and closely correlate with disease activity (r = 0.784, p < 0.05). Conclusions. The analysis of the conducted studies showed that decreased disease activity is not accompanied by the QoL indicators optimization, which remain reduced. Recently, the situation with the QoL assessment in domestic medicine has been improving, relevant questionnaires are being actively introduced. However, the ambiguity of the results in world medicine and the presence of a small number of works on this topic determine the urgency of the problem of QoL in children with JIA in Ukraine.
This work is licensed under a Creative Commons Attribution 4.0 International License.
Our edition uses the copyright terms of Creative Commons for open access journals.
Authors, who are published in this journal, agree with the following terms:
- The authors retain rights for authorship of their article and grant to the edition the right of first publication of the article on a Creative Commons Attribution 4.0 International License, which allows others to freely distribute the published article, with the obligatory reference to the authors of original works and original publication in this journal.
- Directing the article for the publication to the editorial board (publisher), the author agrees with transmitting of rights for the protection and using the article, including parts of the article, which are protected by the copyrights, such as the author’s photo, pictures, charts, tables, etc., including the reproduction in the media and the Internet; for distributing; for the translation of the manuscript in all languages; for export and import of the publications copies of the writers’ article to spread, bringing to the general information.
- The rights mentioned above authors transfer to the edition (publisher) for the unlimited period of validity and on the territory of all countries of the world.
- The authors guarantee that they have exclusive rights for using of the article, which they have sent to the edition (publisher). The edition (the publisher) is not responsible for the violation of given guarantees by the authors to the third parties.
- The authors have the right to conclude separate supplement agreements that relate to non-exclusive distribution of their article in the form in which it had been published in the journal (for example, to upload the work to the online storage of the journal or publish it as part of a monograph), provided that the reference to the first publication of the work in this journal is included.
- The policy of the journal permits and encourages the publication of the article in the Internet (in institutional repository or on a personal website) by the authors, because it contributes to productive scientific discussion and a positive effect on efficiency and dynamics of the citation of the article.
- The rights to the article are deemed transferred by the authors to the edition (the publisher) since the moment of the publication of the article in the printed or electronic version of journal.
Dzhus MB. Kliniko-patogenetychne obg'runtuvannja vedennja hvoryh na juvenil'nyj revmatoi'dnyj artryt vid pidlitkovogo do doroslogo viku. Diss. dokt. med. nauk [Clinical and pathogenetic rationale for the management of juvenile rheumatoid arthritis patients from adolescence to adulthood. Dr. med. sci. diss.]. Kyiv; 2019. 429 p. (in Ukrainian).
Shevchenko NS, Bogmat LF, Demyanenko MV, Panchenko MV, Sokol OO. Eye damage as a comorbid condition in juvenile idiopathic arthritis. Ukrainian Journal of Rheumatology. 2020;79(1):70-75. doi:10.32471/rheumatology.2707-6970.79.14813. (in Ukrainian).
Kondratiuk VE, Sydorova MV, Ivashkivskyi AI, Beyko HV, Kovhanych TO. Clinical and immunological features of uveitis in rheumatic diseases. Ukrainian Journal of Rheumatology. 2014;(56):45-50. (in Ukrainian).
Ministry of Нealth of Ukraine. Order on October 22, 2012 № 832. On Adoption of the Unified Clinical Protocol of Medical Care for Children with Juvenile Arthritis. Available from: https://zakon.rada.gov.ua/rada/show/v0832282-12#Text. Accessed: October 22, 2012. (in Ukrainian).
Angeles-Han ST, Ringold S, Beukelman T, et al. 2019 American College of Rheumatology/Arthritis Foundation Guideline for the Screening, Monitoring, and Treatment of Juvenile Idiopathic Arthritis-Associated Uveitis. Arthritis Care Res (Hoboken). 2019 Jun;71(6):703-716. doi:10.1002/acr.23871.
Van Straalen JW, Giancane G, Amazrhar Y, et al. Predicting the individual risk of uveitis in children with juvenile idiopathic arthhritis: an inernational multicenter cohort study. In: Proceeding of the XXVI European Paediatric Rheumatology Congress. 2020, September 23-25; Geneva, Switzerland. Geneva; 2020. 70 p.
Ravelli A, Consolaro A, Horneff G, et al. Treating juvenile idiopathic arthritis to target: recommendations of an international task force. Ann Rheum Dis. 2018 Jun;77(6):819-828. doi:10.1136/annrheumdis-2018-213030.
Schoemaker CG, Swart JF, Wulffraat NM. Treating juvenile idiopathic arthritis to target: what is the optimal target definition to reach all goals? Pediatr Rheumatol Online J. 2020 Apr 16;18(1):34. doi:10.1186/s12969-020-00428-7.
Brimzhanova MD. Kachestvo zhizni detei doshkol'nogo vozrasta s vrozhdennymi porokami razvitiia. Diss. kand. med. nauk [Quality of life of preschool children with congenital malformations. PhD in med. sci. diss.]. Almaty; 2017. 126 p. (in Russian).
Kovalchuk TA, Luchyshyn NYu. Efficiency of quality of life assessment in children with articular syndrome in the practice of family doctor. Bolʹ, sustavy, pozvonočnik. 2016;4(24):24-28. doi:10.22141/2224-1507.4.24.2016.94623. (in Ukrainian).
Galstyan LA, Zholobova ES, Chebysheva SN, Meleshkina AV, Seraya VA, Loskutova OYu. Uveitis associated with juvenile idiopathic arthritis. Rossijskij vestnik perinatologii i pediatrii. 2019;64(2):30-37. doi:10.21508/1027-4065-2019-64-2-30-37. (in Russian).
Boyko YaYe, Gritsyuk II, Consolaro A, Bovis F, Ruperto N. Introducing the ukrainian version of juvenile arthritis multidimentional assessment report into paediatric rheumatology practice. Ukrainian Journal of Rheumatology. 2018;(72):32-34. (in Ukrainian).
Duffy CM, Arsenault L, Duffy KN, Paquin JD, Strawczynski H. The Juvenile Arthritis Quality of Life Questionnaire--development of a new responsive index for juvenile rheumatoid arthritis and juvenile spondyloarthritides. J Rheumatol. 1997 Apr;24(4):738-746.
Ruperto N, Ravelli A, Pistorio A, et al. Cross-cultural adaptation and psychometric evaluation of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ) in 32 countries. Review of the general methodology. Clin Exp Rheumatol. 2001 Jul-Aug;19(4 Suppl 23):S1-9.
Varni JW, Seid M, Smith Knight T, Burwinkle T, Brown J, Szer IS. The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module. Arthritis Rheum. 2002 Mar;46(3):714-725. doi:10.1002/art.10095.
Scott D, Scott C, Jelsma J, Abraham D, Verstraete J. Validity and feasibility of the self-report EQ-5D-Y as a generic Health-Related Quality of Life outcome measure in children and adolescents with Juvenile Idiopathic Arthritis in Western Cape, South Africa. S Afr J Physiother. 2019 Jul 30;75(1):1335. doi:10.4102/sajp.v75i1.1335.
Mańczak M, Rutkowska-Sak L, Raciborski F. Health-related quality of life in children with juvenile idiopathic arthritis - child's and parent's point of view. Reumatologia. 2016;54(5):243-250. doi:10.5114/reum.2016.63665.
Tarakci E, Baydogan SN, Kasapcopur O, Dirican A. Cross-cultural adaptation, reliability, and validity of the Turkish version of PedsQL 3.0 Arthritis Module: a quality-of-life measure for patients with juvenile idiopathic arthritis in Turkey. Qual Life Res. 2013 Apr;22(3):531-536. doi:10.1007/s11136-012-0180-0.
Pakpour AH, Zeidi IM, Hashemi F, Saffari M, Burri A. Health-related quality of life in young adult patients with rheumatoid arthritis in Iran: reliability and validity of the Persian translation of the PedsQL™ 4.0 Generic Core Scales Young Adult Version. Clin Rheumatol. 2013 Jan;32(1):15-22. doi:10.1007/s10067-012-2084-3.
Butbul Aviel Y, Stremler R, Benseler SM, et al. Sleep and fatigue and the relationship to pain, disease activity and quality of life in juvenile idiopathic arthritis and juvenile dermatomyositis. Rheumatology (Oxford). 2011 Nov;50(11):2051-2060. doi:10.1093/rheumatology/ker256.
Tarakçı E, Arman N, Barut K, Şahin S, Adroviç A, Kasapçopur Ö. Fatigue and sleep in children and adolescents with juvenile idiopathic arthritis:a cross-sectional study. Turk J Med Sci. 2019 Feb 11;49(1):58-65. doi:10.3906/sag-1711-167.
Maca SM, Amirian A, Prause C, Gruber K, Mejdoubi L, Barisani-Asenbauer T. Understanding the impact of uveitis on health-related quality of life in adolescents. Acta Ophthalmol. 2013 May;91(3):e219-224. doi:10.1111/aos.12016.
Jalil A, Yin K, Coyle L, Harper R, Jones NP. Vision-related quality of life and employment status in patients with uveitis of working age: a prospective study. Ocul Immunol Inflamm. 2012 Aug;20(4):262-265. doi:10.3109/09273948.2012.684420.
Ezzahri M, Amine B, Rostom S, et al. The uveitis and its relationship with disease activity and quality of life in Moroccan children with juvenile idiopathic arthritis. Clin Rheumatol. 2013 Sep;32(9):1387-1391. doi:10.1007/s10067-013-2262-y.
Vigil EM, Sepah YJ, Watters AL, et al. Assessment of changes in quality of life among patients in the SAVE Study - Sirolimus as therapeutic Approach to uVEitis: a randomized study to assess the safety and bioactivity of intravitreal and subconjunctival injections of sirolimus in patients with non-infectious uveitis. J Ophthalmic Inflamm Infect. 2015 Apr 18;5:13. doi:10.1186/s12348-015-0044-1.
Gui W, Dombrow M, Marcus I, et al. Quality of Life in Patients with Noninfectious Uveitis Treated with or without Systemic Anti-inflammatory Therapy. Ocul Immunol Inflamm. 2015 Apr;23(2):135-143. doi:10.3109/09273948.2013.874445.
Fabiani C, Vitale A, Orlando I, et al. Impact of Uveitis on Quality of Life: A Prospective Study from a Tertiary Referral Rheumatology-Ophthalmology Collaborative Uveitis Center in Italy. Isr Med Assoc J. 2017 Aug;19(8):478-483.
Haasnoot AJW, Sint Jago NFM, Tekstra J, de Boer JH. Impact of Uveitis on Quality of Life in Adult Patients With Juvenile Idiopathic Arthritis. Arthritis Care Res (Hoboken). 2017 Dec;69(12):1895-1902. doi:10.1002/acr.23224.
Arriola-Villalobos P, Abásolo L, García-Feijoo J, et al. Vision-related Quality of Life in Patients with Non-infectious Uveitis: A Cross-sectional Study. Ocul Immunol Inflamm. 2018;26(5):717-725. doi:10.1080/09273948.2017.1285034.
Foeldvari I, Klotsche J, Simonini G, et al. Proposal for a definition for response to treatment, inactive disease and damage for JIA associated uveitis based on the validation of a uveitis related JIA outcome measures from the Multinational Interdisciplinary Working Group for Uveitis in Childhood (MIWGUC). Pediatr Rheumatol Online J. 2019 Oct 1;17(1):66. doi:10.1186/s12969-019-0345-2.
Taha R, Papadopoulou M, Zetterberg M, Oskarsdottir S, Grönlund MA. Visual Function And Quality Of Life In A Cohort Of Swedish Children With Juvenile Idiopathic Arthritis. Clin Ophthalmol. 2019 Oct 24;13:2081-2091. doi:10.2147/OPTH.S202486.
Cassedy A, Altaye M, Andringa J, et al. Assessing the validity and reliability of the Effects of Youngsters' Eyesight on Quality of Life (EYE-Q) questionnaire among children with uveitis. Arthritis Care Res (Hoboken). 2020 Oct 21. doi:10.1002/acr.24491.
Sestan M, Grguric D, Sedmak M, et al. Quality of life in children suffering from juvenile idiopathic arthritis-associated uveitis. Rheumatol Int. 2020 Jul;40(7):1117-1121. doi:10.1007/s00296-020-04536-1.
Bertrand PJ, Jamilloux Y, Kodjikian L, et al. Quality of life in patients with uveitis: data from the ULISSE study (Uveitis: cLInical and medico-economic evaluation of a Standardised Strategy for the Etiological diagnosis). Br J Ophthalmol. 2021 Jul;105(7):935-940. doi:10.1136/bjophthalmol-2020-315862.
Angeles-Han ST, Griffin KW, Harrison MJ, et al. Development of a vision-related quality of life instrument for children ages 8-18 years for use in juvenile idiopathic arthritis-associated uveitis. Arthritis Care Res (Hoboken). 2011 Sep;63(9):1254-1261. doi:10.1002/acr.20524.
Consolaro A, Giancane G, Alongi A, et al. Phenotypic variability and disparities in treatment and outcomes of childhood arthritis throughout the world: an observational cohort study. Lancet Child Adolesc Health. 2019 Apr;3(4):255-263. doi:10.1016/S2352-4642(19)30027-6.
Van Straalen JW, Giancane G, Amazrhar Y, et al. A clinical prediction model for estimating the risk of developing uveitis in patients with juvenile idiopathic arthritis. Rheumatology (Oxford). 2021 Jun 18;60(6):2896-2905. doi:10.1093/rheumatology/keaa733.
Minden K, Betenstehl N, Klotsche J, et al. Frequency of comorbidities in JIA patients - results of an observational cohort study. Annals of the Rheumatic Diseases. 2017;76(Suppl 2):195. doi:10.1136/annrheumdis-2017-eular.5858.
Hullmann SE, Ryan JL, Ramsey RR, Chaney JM, Mullins LL. Measures of general pediatric quality of life: Child Health Questionnaire (CHQ), DISABKIDS Chronic Generic Measure (DCGM), KINDL-R, Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales, and Quality of My Life Questionnaire (QoML). Arthritis Care Res (Hoboken). 2011 Nov;63(Suppl 11):S420-430. doi:10.1002/acr.20637.