Burden of childhood-onset arthritis

Abstract

Juvenile arthritis comprises a variety of chronic inflammatory diseases causing erosive arthritis in children, often progressing to disability. These children experience functional impairment due to joint and back pain, heel pain, swelling of joints and morning stiffness, contractures, pain, and anterior uveitis leading to blindness. As children who have juvenile arthritis reach adulthood, they face possible continuing disease activity, medication-associated morbidity, and life-long disability and risk for emotional and social dysfunction. In this article we will review the burden of juvenile arthritis for the patient and society and focus on the following areas: patient disability; visual outcome; other medical complications; physical activity; impact on HRQOL; emotional impact; pain and coping; ambulatory visits, hospitalizations and mortality; economic impact; burden on caregivers; transition issues; educational occupational outcomes, and sexuality.The extent of impact on the various aspects of the patients', families' and society's functioning is clear from the existing literature. Juvenile arthritis imposes a significant burden on different spheres of the patients', caregivers' and family's life. In addition, it imposes a societal burden of significant health care costs and utilization. Juvenile arthritis affects health-related quality of life, physical function and visual outcome of children and impacts functioning in school and home. Effective, well-designed and appropriately tailored interventions are required to improve transitioning to adult care, encourage future vocation/occupation, enhance school function and minimize burden on costs.

EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases

“…Disease-related sequelae are still observed, although with modern approaches to management, many YP are transferring to adult care in clinical remission albeit on medication 11–13. All YP with jRMDs are, in principle, at significant risk of disability, early morbidity and limitations in participation later in life 14 15. These YP need continuous and developmentally appropriate care during and beyond adolescence to ensure optimal functioning in adulthood.…”

The effects of high intensity interval training in women with rheumatic disease: a pilot study

“…The disease is poorly described in adult patients, due to absence of research and understanding of the pathology. Adult-JIA is often associated with life-long disability and risk for emotional and social dysfunction (Moorthy et al 2010).…”

The spectrum of rheumatic in-patient diagnoses at a pediatric hospital in Kenya

“…They are associated with the potential for physical disability, diminished quality of life and significant direct and indirect costs [1–3]. This underscores the importance of early diagnosis and treatment.…”