Experiences of living with juvenile idiopathic arthritis: a qualitative systematic review

Abstract

The objective of this review was to investigate the available qualitative evidence to enhance understanding of the experiences of children and young adults living with juvenile idiopathic arthritis, and their carers, in any setting.Introduction: Juvenile idiopathic arthritis is the most common chronic rheumatic disease in childhood. Despite the availability of effective treatments, persistent pain, growth retardation, physical disability, and psychological problems can occur. This may reduce the quality of life for patients with juvenile idiopathic arthritis by negatively affecting their family, educational, and social well-being. Patient-centered management and care for patients with juvenile idiopathic arthritis requires increasing attention to their self-reported quality of life and experiences, in addition to clinically measured disease activity. Furthermore, caring for children with juvenile idiopathic arthritis may have negative impacts on the lives of their carers and families. The experiences of carers have been poorly understood and studied. This review describes experiences and perspectives from patients and carers in order to inform the needs of families throughout their juvenile idiopathic arthritis journey.Inclusion criteria: Studies describing the experiences of patients aged <21 years who have been diagnosed with juvenile idiopathic arthritis according to the International League of Associations for Rheumatology criteria, as well as the experiences of their carers, have been considered.

Quality of life in children with glaucoma: a qualitative interview study in Australia

“…Adolescents with type 1 diabetes additionally reported issues balancing demands between medical management and non-disease related pressures of being an adolescent 30. Disease stigmatisation, social isolation, self-image and school absenteeism concerns were otherwise experienced among children of any age with asthma and epilepsy,31 type 1 diabetes27 28 and juvenile idiopathic arthritis 32. Thus, the issues identified in children with glaucoma align with the greater childhood chronic disease experience and their impact may be exacerbated when a child approaches adulthood.…”

Implementing GRADE in systematic reviews that adhere to JBI methodological conduct

“…An "assessing confidence in the findings" section should also be included in the methods of the SR. Additionally, a ConQual SoF should be presented after the abstract. It should contain details of the synthesized findings, the type of research, the dependability and credibility rankings, the overall ConQual score, and explanation of ratings and reasons for downgrading/not downgrading (commonly placed in the comments section 61,62 ).…”

Quality of life in children and adults with Idiopathic juvenile arthritis: cross-sectional study in Brazilian patients

“…Chronic pain and physical restrictions limiting participation at school, sports activities and social events are some of the contributors to the reduction of well-being. Loss of QoL may occur even when the inflammatory activity is well controlled 3 due to functional disabilities secondary to joint damage, deformities and drugs' side effects such as low bone mass and growth restriction 4 . Growth disturbances and joint contractures may also impact in the corporal image bringing psychological problems and social isolation.…”

“…Therefore, the ideal treatment in JIA should include a multidisciplinary team. Some children, mainly those with oligoarticular JIA, accomplish remission 1 , but almost half of JIA patients may have the active disease during adulthood 4 and many will have some restriction in their activities of daily living 5 . The therapeutic approach to JIA has changed with the introduction of new drugs and strategies that seek to obtain the best control of inflammatory activity 1,5 .…”