Measuring quality of life in children with attention-deficit/hyperactivity disorder and their families: development and evaluation of a new tool

OBJECTIVE: To psychometrically evaluate a new parent-completed questionnaire that measures the effect of attention-deficit/hyperactivity disorder (ADHD) on the everyday well-being of children and their families. SETTING: Using a mail-out/mail-back method, the sample was drawn from the registry of an outpatient developmental and behavioral program of a large tertiary pediatric hospital. All children received medication for ADHD. PARTICIPANTS: Responses were received for 81 children of whom 60 (74%) were boys. An even split of questionnaires was returned for children with ADHD primarily inattentive (50%) and ADHD combined (50%). The condition of 70 patients (86%) had been diagnosed for 1 year or longer; 69 patients (89%) reported receiving medication. MAIN OUTCOME MEASURE: The ADHD Impact Module, HealthAct, Boston, Mass, developed with input from families, measures the effect of the disorder on the child's emotional-social well-being (Child Scale, 8 items) and the family (Home Scale, 10 items). RESULTS: The scales exceeded standard criteria for item convergent and discriminant validity. No floor effects and minimal (2%) ceiling effects were observed. Cronbach alpha was 0.88 and 0.93 (Child and Home Scales), respectively. Raw scale scores are transformed on a 0 through 100 continuum; a higher score indicates more favorable findings. Statistically significant differences (P<.000) were observed for ADHD inattentive vs ADHD combined on both scales (Child, 65.26 vs 48.86; Home, 72.79 vs 51.26). Better "success at home" scores were reported by parents of ADHD inattentive children (Child Scale, 62.12 vs 47.36, P =.00; Home Scale, 70.58 vs 47.01, P =.000). CONCLUSIONS: The ADHD Impact Module meets stringent psychometric standards. Further validation is required, but current evidence suggests it is a promising new questionnaire.