Abstract
Pediatric rheumatic diseases with predominant musculoskeletal involvement such as juvenile idiopathic arthritis (JIA) and juvenile dermatomyositis(JDM) can cause considerable physical functional impairment and significantly affect the children's quality of life (QOL). Physical function, QOL, health-related QOL (HRQOL) and health status are personal constructs used as outcomes to estimate the impact of these diseases and often used as proxies for each other. The chronic, fluctuating nature of these diseases differs within and between patients, and complicates the measurement of these outcomes. In children, their growing needs and expectations, limited use of age-specific questionnaires, and the use of proxy respondents further influences this evaluation. This article will briefly review the different constructs inclusive of and related to physical function, and the scales used for measuring them. An understanding of these instruments will enable assessment of functional outcome in clinical studies of children with rheumatic diseases, measure the impact of the disease and treatments on their lives, and guide us in formulating appropriate interventions.
Highlights
Pediatric rheumatic diseases causing arthritis, fatigue, muscle weakness and blindness are associated with significant functional impairment
Quality of life (QOL), health-related QOL (HRQOL), physical function and health status scales are all used as outcome measures in children with significant musculoskeletal involvement, and account for varying degrees of patient-perceived state of physical ability/and or impact of physical disability on overall well being
The World Health Organization QOL group defined QOL as "individuals' perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships, and their relationships to salient features of their environment" [1]
Summary
Pediatric rheumatic diseases causing arthritis, fatigue, muscle weakness and blindness are associated with significant functional impairment. Other potential limitations of the functional status measures include ceiling effect, score inflation by inflammatory pain, reversibility of functional limitations (when secondary to inflammation instead of true damage), non applicability in younger children, lack of clinical studies to establish all the psychometric properties, and increased length and problems with administering them (such as the need for skilled personnel) Most of these physical function scales measure functional ability and in some cases general health status (such as the Short Form and the Child Health Questionnaire) but cannot be used as proxies for HRQOL or QOL. It is a parent-report comprising the following domains: physical functional status, psychosocial functioning, behavior, general health perceptions, and family functioning and impact of disease [72,73] This scale consists of the CHQ as the core general health status measure and consists of a module focused on juvenile arthritis [74,75].
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