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Outcomes of paediatric rheumatic disease 

Outcomes of paediatric rheumatic disease
Chapter:
Outcomes of paediatric rheumatic disease
Author(s):

Kirsten Minden

DOI:
10.1093/med/9780199642489.003.0035_update_003

Update:

Description of therapeutic response measures modified to include the disease activity score for patients with juvenile spondyloarthritis and the core set criteria for JDM, defined by the International Myositis Assessment and Clinical Studies Group.

Data on mortality in PRD modified to include recently published studies.

Tables 35.1, 35.3 and 35.4 on core sets of disease activity measures, outcome studies and study summary on organ damage in PRD modified to include current outcome data.

Description of uveitis outcome and cardiovascular disease risk modified to include recently published data.

Description of societal consequences, including cost, modified to consider current literature.

Updated on 24 May 2018. The previous version of this content can be found here.
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date: 19 December 2018

Paediatric rheumatic illnesses are among the most common chronic diseases in children and adolescents. These illnesses have important impacts on patient’s body functions and structures, activities, and social participation. Knowledge about the effect and consequences of these diseases is necessary to formulate appropriate aims of treatments. The multidimensional outcomes of paediatric rheumatic diseases and their measurement are reviewed in this chapter. Outcome measurement is complex in patients who have growing needs and changing expectations as they develop, especially in chronic conditions that have a variable and often unpredictable course, such as juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and juvenile dermatomyositis. Considerable work has been conducted recently in an effort to better define and value global outcomes for these patients. New and reliable outcome measures have been developed to capture all aspects of the patient’s life and integrate the patients’ perspective. Existing outcome studies of paediatric rheumatic diseases have consistently shown, even though differing in their methodology, that patient outcomes have improved over the last decade. More patients with chronic inflammatory rheumatic conditions survive into adulthood, and patients’ long-term health, functional, and quality of life outcomes have improved. However, outcomes are still less than ideal. More than one-half of the patients with paediatric rheumatic diseases have ongoing active disease in early adulthood. Over one-third have evidence of disability and organ damage, with each underlying disease being associated with specific complications. Clearly, given the inherent potential for disability, morbidity, even mortality, young people with paediatric-onset rheumatic diseases require ongoing medical care into adulthood.

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