scholarly journals Quality of life problems in children with juvenile idiopathic arthritis and its subtype associated with uveitis (literature review and own research)

2021 ◽  
Vol 16 (4) ◽  
pp. 270-278
Author(s):  
L.F. Bogmat ◽  
A.A. Fadieieva ◽  
N.S. Shevchenko

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.

2021 ◽  
Vol 12 ◽  
Author(s):  
Caroline Vinit ◽  
Sophie Georgin-Lavialle ◽  
Aikaterini Theodoropoulou ◽  
Catherine Barbier ◽  
Alexandre Belot ◽  
...  

BackgroundInterleukin (IL)-1 inhibitors represent the main treatment in patients with colchicine-resistant/intolerant familial Mediterranean fever (crFMF), mevalonate kinase deficiency (MKD), and tumor necrosis factor receptor-associated periodic syndrome (TRAPS). However, the reasons for the use of IL-1 inhibitors in these diseases are still not completely clarified.ObjectiveIdentify real-life situations that led to initiating anakinra or canakinumab treatment in hereditary recurrent fevers (HRFs), combining data from an international registry and an up-to-date literature review.Patients and MethodsData were extracted from the JIRcohort, in which clinical information (demographic data, treatment, disease activity, and quality of life) on patients with FMF, MKD, and TRAPS was retrospectively collected. A literature search was conducted using Medline, EMBASE, and Cochrane databases.ResultsComplete data of 93 patients with HRF (53.8% FMF, 31.2% MKD, and 15.1% TRAPS) were analyzed. Data from both the registry and the literature review confirmed that the main reasons for use of IL-1 blockers were the following: failure of previous treatment (n = 57, 61.3% and n = 964, 75.3%, respectively), persistence of disease activity with frequent attacks (n = 44, 47.3% and n = 1,023, 79.9%) and/or uncontrolled inflammatory syndrome (n = 46, 49.5% and n = 398, 31.1%), severe disease complication or associated comorbidities (n = 38, 40.9% and n = 390, 30.4%), and worsening of patients’ quality of life (n = 36, 38.7% and n = 100, 7,8%). No reasons were specified for 12 (16.4%) JIRcohort patients and 154 (12%) patients in the literature.ConclusionIn the absence of standardized indications for IL-1 inhibitors in crFMF, MKD, and TRAPS, these results could serve as a basis for developing a treat-to-target strategy that would help clinicians codify the therapeutic escalation with IL-1 inhibitors.


2009 ◽  
Vol 36 (11) ◽  
pp. 2443-2448 ◽  
Author(s):  
VARUN DHIR ◽  
ABLE LAWRENCE ◽  
AMITA AGGARWAL ◽  
RAMNATH MISRA

Objectives.Fibromyalgia (FM) has been shown to be common in patients with rheumatoid arthritis (RA), but studies on Asian patients are lacking. It remains unclear whether FM has an adverse influence on pain, fatigue, quality of life, and mood in these patients, and what its relationship is with disease activity. We studied prevalence and effects of FM in North Indian patients with RA and associations of RA with disease activity.Methods.This cross-sectional study included 200 RA patients and an equal number of controls. Presence of FM was defined using the American College of Rheumatology 1990 criteria. Pain and fatigue scores were assessed using a 10 cm visual analog scale. Quality of life and presence of depression/anxiety were determined using validated questionnaires. Disease activity and functional disability in RA patients was assessed using the Disease Activity Score 28-3 and Health Assessment Questionnaire, respectively.Results.FM was present in 15% of patients with RA compared to 2.5% of controls in the North Indian population. RA patients with FM did not differ from those without FM in terms of age, gender, current disease-modifying agents, or steroid use. RA patients with FM had higher disease activity and worse functional disability. The number of tender and swollen joints was higher in patients with FM, but correlated poorly with each other. RA patients with FM had higher pain and fatigue scores but were not different in the quality of life or mood.Conclusion.FM is more common in North Indian patients with RA compared to controls. It adversely affects the pain and fatigue felt by RA patients. Disease activity and FM influence each other.


Rheumatology ◽  
2011 ◽  
Vol 50 (11) ◽  
pp. 2051-2060 ◽  
Author(s):  
Y. Butbul Aviel ◽  
R. Stremler ◽  
S. M. Benseler ◽  
B. Cameron ◽  
R. M. Laxer ◽  
...  

Author(s):  
David L. Scott

Outcomes evaluate the impact of disease. In rheumatology they span measures of disease activity, end-organ damage, and quality of life. Some outcomes are categorical, such as the presence or absence of remission. Other outcomes involve extended numeric scales such as joint counts, radiographic scores, and quality of life measures. Outcomes can be measured in the short term—weeks and months—or over years and decades. Short-term outcomes, though readily related to treatment, may have less relevance for patients. Clinical trials focus on short-term outcomes whereas observational studies explore longer-term outcomes. The matrix of rheumatic disease outcomes is exemplified by rheumatoid arthritis. Its outcomes span disease activity assessments like joint counts, damage assessed by erosive scores, quality of life evaluated by disease-specific measures like the Health Assessment Questionnaire (HAQ) or generic measures like the Short Form 36 (SF-36), overall assessments like remission, and end result such as joint replacement or death. Outcome measures are used to capture the impact of treating rheumatic diseases, and are influenced by both disease severity and the effectiveness of treatment. However, they are also influenced by a range of confounding factors. Demographic factors like age, gender, and ethnicity can all have crucial impacts. Deprivation is important, as poverty invariably worsens outcomes. Finally, comorbidities affect outcomes and patients with multiple comorbid conditions usually have worse quality of life with poorer outcomes for all diseases. These multiple confounding factors mean comparing outcomes across units without adjustment will invariably show major differences.


RMD Open ◽  
2020 ◽  
Vol 6 (1) ◽  
pp. e001170 ◽  
Author(s):  
Ennio Lubrano ◽  
Silvia Scriffignano ◽  
Ana Belen Azuaga ◽  
Julio Ramirez ◽  
Juan Canete ◽  
...  

ObjectiveThe aim of this study was to evaluate the discriminant capability of the Patient Acceptable Symptom State (PASS) according to disease activity, remission/low disease activity indices and quality of life indices in patients with psoriatic arthritis (PsA).MethodsConsecutive patients with PsA were enrolled in this cross-sectional study. At each visit, the patients underwent a complete physical examination and their clinical/laboratory data were collected. Disease activity was assessed using the Disease Activity Score for Psoriatic Arthritis (DAPSA) and remission/low disease activity using the DAPSA minimal disease activity (MDA) and very low disease activity (VLDA) criteria. The Psoriatic Arthritis Impact of Disease (PsAID) and the Health Assessment Questionnaire-Disability Index scores were also collected. Finally, PASS was assessed by asking all patients to answer yes or no to a single question.ResultsPatients who answered yes to PASS showed a significantly better overall mean DAPSA score than those who were not in PASS. Furthermore, patients in PASS showed a significantly lower level of systemic inflammation, lower Leeds Enthesitis Index score, a significantly lower impact of disease (PsAID), lower pain and better function than patients who answered no to PASS. A moderate to good agreement was found between PASS, MDA, DAPSA low disease activity and PsAID score ≤4. Good sensitivity and specificity were found with PASS with respect to DAPSA low disease activity, and although PASS is sensitive in the identification of patients with MDA, DAPSA remission and VLDA it lacks of specificity.DiscussionThis study showed that PASS might be used as an alternative to determine disease activity in patients with PsA in real clinical practice, mainly in patients with low disease activity according to DAPSA criteria.


Author(s):  
Pedro Ricardo Kömel Pimenta ◽  
Michael Ruberson Ribeiro da Silva ◽  
Jéssica Barreto Ribeiro dos Santos ◽  
Adriana Maria Kakehasi ◽  
Francisco de Assis Acurcio ◽  
...  

Aim: To evaluate the effectiveness and safety of anti-TNF drugs for ankylosing spondylitis. Materials & methods: A prospective cohort study was performed at a pharmacy in the Brazilian Public Health System. Effectiveness by Bath Ankylosing Spondylitis Disease Activity Index, functionality by Health Assessment Questionnaire Disability Index, quality of life by European Quality of Life Five-Dimensions and safety was assessed at 6 and 12 months of follow-up. Results: About 160 patients started the treatment with adalimumab, etanercept or infliximab. There was a statistically significant improvement in disease activity, functionality and quality of life at 6 and 12 months (p < 0.05). Conclusion: This real-world study has shown that anti-TNF drugs are effective and well tolerated for ankylosing spondylitis patients.


2021 ◽  
Author(s):  
Ichiro Yoshii ◽  
Tatsumi Chijiwa ◽  
Naoya Sawada

Abstract Importance of time length to achieving clinical remission on disease activity control, daily activities (ADL) and quality of life (QOL) maintenance after the remission was investigated for patients with rheumatoid arthritis (RA).In patients who achieved remission once or more, relationship between time length from initiation to achieve remission (TL) and patients’ background data at baseline, and relationship between TL and mean simplified disease activity score (SDAI), modified Health Assessment Questionnaire Disability Index (HAQ-DI) score, pain score with visual analog scale (PS-VAS), Sharp/van der Heijde Score (SHS) and quality of life score (QOLS) at the first remission and thereafter were evaluated statistically. Patients were divided into two groups whether TL was within 6 months or longer (G≤6 and G>6). Change of the parameters and Boolean remission rate (BRR) after the first remission between the two groups were compared statistically.In 465 patients, TL correlated significantly with the SDAI score, the HAQ score, PS-VAS, SHS, and the QOLS after the remission. The SDAI score and the BRR after the first remission were significantly better in the G≤6 than in the G>6.TL is an important key to guarantee good disease activity control, ADL and QOL.


Sign in / Sign up

Export Citation Format

Share Document