Parental Perceptions and Educational Needs Concerning Kawasaki Disease

Abstract

Purpose: To determine factors associated with parental knowledge and concerns regarding Kawasaki disease (KD) in order to address misperceptions and educational needs. Methods: Self-administered questionnaire given at a follow-up clinic visit 6 to 8 weeks after the acute illness. Results: Over a 13 month period, surveys were completed by caregivers of 96 consecutive patients (mother in 76%, father 19%, other caregiver 5%). The median patient age was 3 years (range, 3 months to 15 years), 88% had been admitted to hospital (median duration 4 days) and 83% received IVIG. Respondents felt the diagnosis had been delayed in 50%. Only 13% had previously heard of KD before their child became ill. Level of concern or worry about KD was none in 1%, somewhat 14%, very 42% and extremely in 43%. The possibility of cardiac complications was not recognized by 14%. Information sources about KD included the pediatrician in 60%, family doctor 21%, and the internet in 50%. Internet use was significantly associated with increased respondents' level of education. Common concerns identified included the risk of recurrence, long-term follow-up and outlook, “what to look for”, activity and restrictions, heart disease prevention, possible risks of IVIG and increased physician awareness about KD. Preferred educational aides included discussion with doctor in 76%, pamphlet 60%, video 52%, computer program 30% and discussion with nurse 10%. Factors associated with increasing level of concern included younger patient age and not having previously heard about KD. Level of concern was not related to respondent characteristics, perceived difficulties in diagnosis or sources of information used. Conclusion: To address important ongoing caregiver concerns about KD, a variety of educational sources should be offered which address specific concerns. Based on our study results, we have created and posted on our institutional web-site www.sickkids.on.ca) a specific parent information program

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