RESUMO
OBJECTIVE: To prospectively evaluate the acute impact of Kawasaki disease (KD) on health-related quality of life (HRQoL) and to assess deterioration in the HRQoL experienced by children with KD compared with other childhood diseases. STUDY DESIGN: We merged the Outcomes Assessment Program database obtained prospectively with the existing KD database and queried for KD admissions between 1 month and 13 years of age. HRQoL was evaluated with the parent-proxy Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core and Infant Scales. We compared the KD HRQoL results with those obtained from newly diagnosed patients with cancer and pneumonia, matched for age, sex and race. PedsQL total scores over time were assessed with ANCOVA models, adjusted for matching variables and PedsQL score prior to admission. RESULTS: We identified 89 patients with KD and compared 65 subjects with an equal number with pneumonia and with 67 subjects with newly diagnosed cancer. Patients with demonstrated lower PedsQL total score on admission and suffered a significantly greater HRQoL decline from baseline to admission than the other groups. KD diagnostic subtype (complete or incomplete) and coronary artery dilatation were not associated with HRQoL outcomes. However, non-intravenous immunoglobulin responders showed greater HRQoL decline than responders (P = .03). CONCLUSIONS: Children with KD suffer acute and significant HRQoL impairment exceeding that of children newly diagnosed with cancer. Lack of immediate treatment response may exert an additional HRQoL burden, whereas KD subtype and coronary artery dilatation do not.
Assuntos
Efeitos Psicossociais da Doença , Síndrome de Linfonodos Mucocutâneos/psicologia , Qualidade de Vida , Adolescente , Criança , Pré-Escolar , Infecções Comunitárias Adquiridas/psicologia , Bases de Dados Factuais , Feminino , Humanos , Imunoglobulinas Intravenosas/uso terapêutico , Lactente , Masculino , Neoplasias/psicologia , Pais , Pneumonia/psicologia , Estudos Prospectivos , Psicometria/métodosRESUMO
OBJECTIVE: The authors evaluated health-related quality of life (HRQOL) and behavioral functioning in patients with a history of Kawasaki disease (KD). STUDY DESIGN: A cross-sectional study was conducted at a tertiary referral center for KD follow-up in 280 patients (mean age 8.6 years, 60.0% male). Patients were eligible when they were aged 0-18 years and had a history of KD. HRQOL was assessed using the TNO-AZL Preschool Children Quality of Life questionnaire for children 0-5 years old and the Pediatric Inventory of Quality of Life Core Scales 4.0 for those 6-18 years old. Behavioral functioning was evaluated using the Strength and Difficulties Questionnaire (8-16 years proxy report and 11-16 years self-report). KD results were compared with Dutch norm data, and patients with and without coronary artery aneurysms were compared. RESULTS: HRQOL was significantly worse for male patients aged 0-5 years on 4 of the 12 TNO-AZL Preschool Children Quality of Life questionnaire scales and for female patients on the motor functioning scale. At an older age, the HRQOL of patients was comparable with the norm population. Coronary artery status did not influence HRQOL. Parents reported more behavioral problems on the hyperactivity and emotional subscale in patients compared with the norm population. CONCLUSIONS: Although at an older age the HRQOL of patients with KD is comparable with the Dutch norm, HRQOL seems to be particularly impaired at younger age. Parents reported more hyperactivity and emotional problems in patients with KD.