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BACKGROUND: The aim of this study was to reveal the relationship between the health literacy (HL) levels of children with juvenile idiopathic arthritis (JIA) and their parents, and the general health status and physical performance of the children. METHODS: This study included 79 children aged 9-18 years with a diagnosis of JIA and one of their parents. HL levels were evaluated with the Turkish version of the Health Literacy for School-Aged Children and Turkish Health Literacy-32 (THL-32) for children and Adult Health Literacy Scale (AHLS) for their parents. The Childhood Health Assessment Questionnaire (CHAQ), 6-minute walk test (6-MWT), 10-meter walking test (10-MWT) and 10-stair climbing test (10-SCT) was used to evaluate the children. Juvenile Arthritis Biopsychosocial Questionnaire (JAB-Q) was used to assess the children's and parents' psychosocial status and perception of health. RESULTS: HL levels of patients with JIA were 16.5% low HL, %55.7 moderate HL and 27.8% high HL. According to THL-32 scale score, HL level of parents were as follows: inadequate, 3.8%; problematic, 22.8%; sufficient, 34.2%; and excellent, 39.2%. Children's HL levels increase positively as they get older, and no significant relationship was found with other parameters. The AHLS, CHAQ and JAB-Q scores were better in the group with higher education levels of the parents. No statistically significant association was found between the HL of the children and that of the parents. CONCLUSION: In our study, it was found that the high education levels of the parents positively affected the quality of life and physical condition of their children and parental HL levels. In addition, it was shown that the HL levels of children with JIA were not statistically related to other parameters. PATIENT OR PUBLIC CONTRIBUTION: Children diagnosed with JIA and one of their parents actively participated in the study. Feedback from children and families provided important information about obtaining and using HL information before and during the study. The importance of therapy programs and information focusing on the patient and their family, as well as the inter-multidisciplinary approach, in combating a chronic disease at an early age was reinforced by the feedback received from patients and their families.
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Artrite Juvenil , Letramento em Saúde , Nível de Saúde , Pais , Humanos , Artrite Juvenil/psicologia , Feminino , Masculino , Criança , Adolescente , Pais/psicologia , Inquéritos e Questionários , Turquia , Qualidade de VidaRESUMO
AIMS: To examine physical functions, activity, and participation level, and associated factors with participation in children with juvenile idiopathic arthritis (JIA) across the International Classification of Functioning Disability and Health-Children and Youth. METHODS: 49 children (Girl/Boy:28/21) aged between 7 and 18 years (Mean: 13.4 ± 3.3) were included. To evaluate body structure/functioning; pain, fatigue, disease activity, and motor functions were assessed. Childhood Health Assessment Questionnaire and Juvenile Arthritis Biopsychosocial and Clinical Questionnaire were used to determine activity level. Child and Adolescent Scale of Participation was used to assess participation. RESULTS: Mild level of pain (2.0 ± 2.3), disease activity (2.0 ± 2.3), and fatigue (4.1 ± 4.0) were recorded. Decrease in motor functions was determined in 75% of children, while 61% of whom had activity-related disability. There was mild to moderate participation restrictions, and participation was significantly associated with age (r = -0.29), pain severity (r = -0.31), disease activity (r = -0.39), motor functions (r = 0.33), and activity level (r = -0.43), (p Ë 0.05). CONCLUSIONS: Majority of children with JIA have deteriorations in physical functions, activity, and participation. Age, pain, disease activity, motor functions and activity level were associated with participation level. Children with JIA should be regularly evaluated multi-directional and they should be referred to rehabilitation programs to increase functionality and participation.
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CONTEXT: Weight-bearing test (WBT) is a noninvasive quantitative test which has been used recently to determine loading capability of the individuals. The aim of this study was to strengthen the evidence for using the WBT test for measuring weight-bearing capacity of the upper-extremity with the specific objective of examining the internal and external responsiveness and concurrent validity of the test in patients with triangular fibrocartilage complex injury. DESIGN: Single-group repeated measures. METHODS: Internal responsiveness was assessed using effect size statistics. The correlation coefficient was used to examine external responsiveness by testing 5 hypotheses regarding predefined correlations between the changes in the measurements. Concurrent validity was evaluated by analyzing correlations between the WBT and other measurements. Thirty-one patients with triangular fibrocartilage complex injury were included for the analysis of the concurrent validity. Eighteen patients who completed all measurements at baseline and at 3-month follow-up enrolled for the responsiveness analysis. Measurements included the WBT, pain intensity, grip strength, and upper extremity functional level. RESULTS: The WBT test was able to detect statistically significant changes in weight-bearing capacity between baseline and follow-up (P = .0001). The effect size of the WBT was large. Three out of 5 hypotheses (60%) were confirmed, a good correlation was found between changes scores of the WBT and grip strength (r = .478; P < .05). There were significant correlations between the WBT and other measurements (r value range from -.401 to .742; P < .05). A higher correlation was found between the WBT and grip strength (r = .742; P = .0001). CONCLUSIONS: The responsiveness and concurrent validity of the WBT test confirmed that it is able to measure change in weight-bearing capacity in patients with triangular fibrocartilage complex injury.
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Fibrocartilagem Triangular , Artroscopia , Força da Mão , Humanos , Medição da Dor , Fibrocartilagem Triangular/lesões , Extremidade Superior , Suporte de CargaRESUMO
BACKGROUND: This study aimed to investigate the effectiveness of a supervised group exercise therapy based on the biopsychosocial model introduced simultaneously with antitumor necrosis factor (TNF) therapy in anti-TNF-naive patients with active ankylosing spondylitis (AS). METHODS: Forty-eight patients were divided into two groups: the control group (CG; n = 36) received only anti-TNF therapy, and the study group (SG; n = 12) received the supervised exercise therapy based on the biopsychosocial model in addition to anti-TNF therapy. The measurements of disease activity and functionality were evaluated by The Bath AS Disease Activity Index (BASDAI) and The Bath AS Functional Index (BASFI) respectively. Other outcome measures evaluated biopsychosocial status, emotional state, spinal mobility, pain, fatigue, sleep, and quality of life. All measurements were applied to both groups at baseline and repeated 12 weeks later. RESULTS: BASDAI and BASFI analyses revealed significant differences between groups in favor of the SG (p < 0.05). At the end of the 12 weeks, the results showed that there were additional improvements in all outcome measurement parameters in the SG compared to the CG. DISCUSSION: The supervised group exercise therapy based on the biopsychosocial model introduced simultaneously with anti-TNF therapy is more effective than only anti-TNF therapy in anti-TNF-naive patients with active AS.
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Espondilite Anquilosante , Humanos , Espondilite Anquilosante/tratamento farmacológico , Inibidores do Fator de Necrose Tumoral , Qualidade de Vida , Modelos Biopsicossociais , Índice de Gravidade de Doença , Terapia por Exercício/métodos , Resultado do TratamentoRESUMO
OBJECTIVE: To create a new multidimensional questionnaire for the assessment of juvenile idiopathic arthritis (JIA) patients in standard clinical practice and study the validity and reliability of this questionnaire. METHODS: The Juvenile Arthritis Biopsychosocial and Clinical Questionnaire (JAB-Q) was created using the Delphi technique and consensus conference following an initial literature search. The questionnaire has three parts including a clinician form, child form and parent form. This is a patient/parent-centered outcome tool, which helps us to evaluate the biopsychosocial aspects of the patient, including disease activity, posture, functional and psychosocial status, fatigue, and performance in school. From January 2015 to January 2018, 6-18 years old children with JIA were enrolled in the study. The previously validated questionnaires were also applied to each participant to validate the JAB-Q: Juvenile Idiopathic Disease Arthritis Score (JADAS) and Childhood Health Assessment Questionnaire (CHAQ), and the Family Impact Questionnaire (FIS). The same questionnaire was re-administered after one week to assess the test-retest reliability in randomly selected 50 children and their parents. RESULTS: A group of experts were invited to the Delphi survey. After the Delphi tours, the final form of the questionnaire containing three parts as clinician form, child form and parent form was created. This tool was applied to 310 JIA patients and their parents. The children and parents easily handled the JAB-Q and filled the forms in around 10-15 min. The validity of the clinician, child and parents' forms were assessed by the JADAS, CHAQ, and FIS, respectively. The validity of these three scales were determined as moderate. In addition, the test-retest reliability of the clinician, child and parents' forms were considerably high. CONCLUSION: JAB-Q is a valid and reliable multidimensional biopsychosocial outcome tool that can be used routinely in clinical practice of pediatric rheumatology. The main advantage of this tool is incorporation of patients' and parents' perspectives separately while providing a practical and standard setting for the clinician's evaluation. However, further validation of this tool in an independent cohort is needed to improve its applicability.
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Artrite Juvenil/diagnóstico , Pais/psicologia , Qualidade de Vida , Inquéritos e Questionários/normas , Adolescente , Criança , Feminino , Humanos , Masculino , Reprodutibilidade dos Testes , Estudos RetrospectivosRESUMO
INTRODUCTION: This study aimed to assess the cultural adaptation, validity, and reliability of the Turkish version of the Juvenile Arthritis Quality of Life Questionnaire (JAQQ) in patients with juvenile idiopathic arthritis (JIA). METHODS: A total of 100 JIA patients (64% female), aged 9 to 18 years, participated in the study conducted at a tertiary care university hospital. The JAQQ was culturally adapted through a rigorous translation process and administered alongside established measures, including the Childhood Health Assessment Questionnaire (CHAQ), Juvenile Arthritis Biopsychosocial Questionnaire (JABQ), and Children's Depression Inventory (CDI). Validity and reliability were evaluated using Spearman's correlation coefficients, Cronbach's alpha, intraclass correlation coefficient (ICC), standard error of the mean (SEM), and minimal detectable change (MDC). RESULTS: The Turkish version of JAQQ exhibited high convergent validity, correlating significantly with CHAQ, JABQ, and CDI. No floor or ceiling effects were observed in the total JAQQ score, indicating a balanced assessment. Internal consistency was excellent (Cronbach's α = 0.948), and test-retest reliability was satisfactory (ICC = 0.913). SEM and MDC95 values were 0.357 and 0.99, respectively. CONCLUSIONS: The Turkish adaptation of JAQQ emerges as a valid and reliable instrument for comprehensively assessing the health-related quality of life in children and adolescents diagnosed with JIA. The questionnaire's robust psychometric properties, coupled with distinctive features like individualized assessment, highlight its potential as a valuable tool for both clinical assessment and scientific research in the field of pediatric rheumatology. Key Points ⢠The Juvenile Arthritis Quality of Life Questionnaire (JAQQ) is an important scale that evaluates the quality of life of children with Juvenile Idiopathic Arthritis (JIA). ⢠JAQQ is known and used in the field of pediatric rheumatology in Turkey, but its Turkish adaptation has not been made before. ⢠Our study includes 100 JIA patients aged between 9 and 18 years and shows that the Turkish version of JAQQ is valid and reliable in measuring the quality of life of these children. ⢠This research contributes to the accurate assessment of the quality of life in Turkish children diagnosed with JIA, providing valuable insights for both clinical and scientific studies.
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Artrite Juvenil , Psicometria , Qualidade de Vida , Humanos , Artrite Juvenil/psicologia , Feminino , Criança , Adolescente , Masculino , Reprodutibilidade dos Testes , Inquéritos e Questionários/normas , Turquia , TraduçõesRESUMO
OBJECTIVE: In this study, we assessed the functional and biopsychosocial characteristics of juvenile idiopathic arthritis (JIA) patients according to disease subtypes. MATERIALS AND METHODS: Child Health Assessment Questionnaire (CHAQ), Juvenile Arthritis Disease Activity Score-71 (JADAS-71), and Juvenile Arthritis Biopsychosocial Questionnaire (JAB-Q) scales were administered to 304 JIA patients, and the subscale of JAB-Q was administered to their families. RESULTS: The median age of JIA patients at diagnosis was 7.9 (5.5-13) years (female/male = 1.3). Most patients were under treatment (68.7%) and had inactive disease (69.3%). While there was no significant difference between JADAS-71 scores according to the JIA subtypes, total CHAQ scores in polyarticular JIA patients were higher than in systemic JIA patients (P = .005). Enthesitis-related arthritis (ERA) patients had higher JAB-Q fatigue total scores compared to systemic JJIA patients (P = .001). Juvenile Arthritis Biopsychosocial Questionnaire-child psychosocial status scores were higher in polyarticular JIA patients than oligoarticular and systemic JIA patients (P = .004 and P = .003, respectively), and they had higher JAB-Q child form total scores than systemic JIA patients (P = .006). In addition, systemic JIA patients' parents had higher JAB-Q family total scores compared to oligoarticular JIA patients' parents (P = .03). CONCLUSION: Our results suggest that polyarticular JIA patients had higher CHAQ, JAB-Q psychosocial status, and child form total scores, and the JAB-Q fatigue score was higher in ERA patients. Also, JAB-Q-parent scores were higher in systemic JIA patients' parents. Biopsychosocial characteristics should be evaluated in both JIA patients and their parents.