Fatigue in patients with Juvenile Idiopathic Arthritis: relationship to perceived health, physical health, self-efficacy, and participation

Armbrust, Wineke; Lelieveld, Otto; Tuinstra, Jolanda; Wulffraat, Nico; Bos, G J F Joyce; Cappon, Jeannette; Rossum, Marion A J van; Sauer, Pieter J. J.; Hagedoorn, Mariët

doi:10.1186/s12969-016-0125-1

Cited by 45 publications

(49 citation statements)

References 40 publications

(53 reference statements)

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“…These challenges can include both somatic and psychosocial aspects 2 3. Fatigue is often one such challenge and can have a significant impact on the well-being and participation in daily life of the child or adolescent and his or her family 4–6…”

Section: Introductionmentioning

confidence: 99%

Fatigue in childhood chronic disease

et al. 2019

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Background and objectivesRecently, in adults, the incidence and severity of fatigue was found to exist rather independently from the somatic diagnosis. Since fatigue is distressing when growing up with a chronic disease, we aim to investigate: (1) the prevalence and extent of fatigue among various paediatric chronic diseases and (2) the effect of fatigue on health-related quality of life (HRQoL).Design and settingCross-sectional study in two children’s hospitals.PatientsChildren and adolescents 2–18 years of age with cystic fibrosis, an autoimmune disease or postcancer treatment visiting the outpatient clinic.Outcome measuresFatigue and HRQoL were assessed using the Pediatric Quality of Life Inventory (PedsQL) multidimensional fatigue scale (with lower scores indicating more fatigue) and PedsQL generic core scales, respectively. Linear regression analysis and analysis of covariance were used to compare fatigue scores across disease groups and against two control groups. The effect of fatigue on HRQoL was calculated. Data were adjusted for age, sex and reporting method.Results481 children and adolescents were assessed (60% participation rate, mean age 10.7±4.9, 42% men). Children and adolescents with chronic disease reported more fatigue than the general population (mean difference −6.6, 95% CI −8.9 to –4.3 (range 0–100)), with a prevalence of severe fatigue of 21.2%. Fatigue scores did not differ significantly between disease groups on any fatigue domain. Fatigue was associated with lower HRQoL on all domains.ConclusionsFatigue in childhood chronic disease is a common symptom that presents across disease, age and sex groups. Fatigue affects HRQoL. Our findings underscore the need to systematically assess fatigue. Future studies should determine possible biological and psychosocial treatment targets.

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Section: Introductionmentioning

confidence: 99%

Fatigue in childhood chronic disease

et al. 2019

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“…In a trajectory analysis, Shiff et al reported that disease activity only accounted for a small portion of variability in pain severity in children with JIA [18]. The same picture emerged for fatigue: although fatigue is a prominent feature in many JIA patients, disease activity seems not to be directly related to it [19][20][21]. Interestingly, Ringold et al hypothesized that pain may be an intermediate link between disease activity and fatigue [21].…”

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confidence: 99%

Treating juvenile idiopathic arthritis to target: what is the optimal target definition to reach all goals?

2020

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In 2018, an international Task Force formulated recommendations for treating Juvenile Idiopathic Arthritis (JIA) to target. The Task Force has not yet resolved three issues. The first issue is the lack of a single "best" target. The Task Force decided not to recommend the use of a specific instrument to assess inactive disease or remission. Recent studies underscore the use of a broad target definition. The second issue is the basic assumption that a treatment aggressively aimed at the target will have 'domino effects' on other treatment goals as well. Thus far, this assumption was not confirmed for pain, fatigue and stiffness. The third issue is shared decision-making, and the role of individual patient targets. Nowadays, patients and parents should have a more active role in choosing targets and their personal treatment goals. In our department the electronic medical records have been restructured in such a way that the patient's personal treatment goals with a target date appears on the front page. The visualization of their specific personal goals helps us to have meaningful discussions on the individualized treatment strategy and to share decisions. In conclusion, a joint treat to target (T2T) strategy is a promising approach for JIA. The Task Force formulated valuable overarching principles and a first version of recommendations. However, implementation of T2T needs to capture more than just inactive disease. Patients and parents should have an active role in choosing personal targets as well.

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“…Notably, participants reported minor JIA symptoms and a good overall well‐being. Overall, there is limited information available from other studies that examined the relationship between school attendance and mood/stiffness , fatigue , and tender joints .…”

Section: Discussionmentioning

confidence: 99%

Patient‐Reported Barriers at School for Children with Juvenile Idiopathic Arthritis

Chomistek

Johnson

Stevenson

et al. 2019

ACR Open Rheumatology

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ObjectiveThe objective of this study was to identify patient‐reported school barriers and their associated impact in juvenile idiopathic arthritis (JIA).MethodsA cross‐sectional observational study of children aged 8 to 17, diagnosed with JIA, and followed in the rheumatology clinic/Alberta Children's Hospital was performed. Demographics, diagnosis, and disease course were obtained from health records. A questionnaire was administered to the child to assess the barriers experienced by JIA patients at school. The questionnaire collected information about school attendance/performance, impact of JIA symptoms (eg, pain and fatigue), physical challenges and accommodations, communication, participation and peers, and school support. Descriptive statistics were used to analyze the data.ResultsA total of 98 children with JIA were recruited into the study. The median age of participants was 13 years (interquartile range 11‐15). The JIA subtypes in this cohort reflected the normal JIA distribution. Physical challenges at school (eg, gym, writing, and sitting for long periods of time) were reported by 42.1% of patients. Accommodations (eg, modified gym, accommodation letter, and computer access) were used by 23% of patients. The inability to participate in activities in class or outside with their peers occurred for 32.2% of patients and in gym for 40.7% of patients. Social concerns included embarrassment from talking about their illness, worry regarding being treated differently, and being told they were fabricating their illness.ConclusionChildren with JIA experienced barriers at school, especially physical challenges, with a need for accommodations in a proportion of children. Decreased participation and increased social anxiety were additional key barriers.

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Fatigue in patients with Juvenile Idiopathic Arthritis: relationship to perceived health, physical health, self-efficacy, and participation

Cited by 45 publications

References 40 publications

Fatigue in childhood chronic disease

Fatigue in childhood chronic disease

Treating juvenile idiopathic arthritis to target: what is the optimal target definition to reach all goals?

Patient‐Reported Barriers at School for Children with Juvenile Idiopathic Arthritis

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