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

OBJECTIVE The objective of this review was to investigate the available qualitative evidence to enhance understanding of the experiences of children, young adults, and their carers living with Juvenile Idiopathic Arthritis 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 Juvenile Idiopathic Arthritis patients by negatively affecting their family, educational, and social well-being. Patient-centered management and care for Juvenile Idiopathic Arthritis patients requires increasing attention to their self-reported quality of life and experiences, in addition to clinically measured disease activity. Furthermore, taking care of 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