The language of breathlessness: do families and health care providers speak the same language when describing asthma symptoms?

INTRODUCTION: Effective communication about symptoms is a critical prerequisite to appropriate treatment. Study aims were to: (a) document the symptoms that children with asthma and their parents associate with asthma, (b) identify differences between the "professional model "of asthma symptoms and the "lay model," (c) describe the family's proposed action in response to symptoms, and (d) investigate the congruence between parental assessment of "good control" and severity obtained using National Asthma Education and Prevention Program criteria.

METHOD: Children with asthma and their parents (N = 228) were recruited from diverse clinical practice sites. Parents and children described symptoms they associated with an asthma exacerbation and their proposed action. Perceived asthma control was compared with a structured assessment of severity.

RESULTS: One hundred and thirty-six unique symptoms were reported. While 78% of parents reported at least one standard asthma symptom, 48% also reported nonstandard asthma symptoms. Sixty-five percent of parents whose children's symptoms were consistent with severe asthma reported "good control."

DISCUSSION: Improved communication about symptoms would improve asthma care. Proposed strategies include standardized screening questionnaires to assess symptoms, more frequent routine visits for children with persistent asthma, and wide dissemination of realistic goals for symptom control.