Background/Purpose Kawasaki Disease (KD), a systemic vasculitis, is the leading cause of acquired heart disease in children, primarily due to the morbidity and mortality associated with the development of coronary artery aneurysms (CAA)While most children with KD have no long term effects, a small portion of them will have long term coronary artery changes that may effect many aspects of their lives, particularly exercise, chronic medication need, more frequent physician visits, and the psychologic burden that such effects cause on a child or young adult.
Methods To evaluate the effect of the KD diagnosis on children and adolescents the Pediatric Cardiac Quality of Life Inventory (PCQLI) questionnaires were administered as part of standard clinical care to children being seen in a multidisciplinary (cardiology, rheumatology, hematology) hyperinflammatory clinic. The age appropriate form was utilized for the children and the parent forms were utilized for the caregivers.
Results To date, ten parent-child dyads completed the PCQLI, 4 with normalized coronary arteries and 6 with persistent coronary artery changes. Median time to follow up from diagnosis is 5.2 years (range 2-12 years). Overall, children with KD seem to be similar to the normal population with respect to evaluated QOL measures. However, this early data suggests children with persistent large and giant coronary artery aneurysms perceive differences from their peers including feeling more limitations and more concern regarding current and future health status. Many also report lack of understanding of the etiology coronary artery problems and identify differences from family members and friends of similar ages.
Conclusions Based on this initial data, children with persistent changes after KD may experience a different quality of life than those without KD or those with KD without persistent coronary artery changes. Further evaluation of the psychosocial and quality of life indicators and appropriate interventions for children with a history of KD are needed. Additionally, educational interventions may be needed to better educate KD survivors and their caregivers.