What Matters to Caregivers of Youth With ADHD: Defining the Minimum Clinically Important Difference for Sleep Treatment

OBJECTIVE: Sleep problems are common among youth with ADHD, and they worsen symptoms as well as day-to-day functioning. As a result, they are of significant concern to caregivers, who are often the ones making treatment decisions. The goal of this study is to understand what caregivers of youth with ADHD and sleep problems want out of treatment. METHODS: One hundred caregivers of clinically-referred youth ages 5 to 18 with a diagnosis of ADHD and reported sleep difficulties completed a 29-item survey covering three domains: (a) the severity of their child's ADHD and sleep symptoms; (b) the importance of improvement in specific ADHD and sleep symptoms; and (c) the degree of improvement in ADHD and sleep symptoms that would be necessary in order for them to feel that treatment was meaningful (i.e., the Minimum Clinically Important Difference or MCID). RESULTS: Overall, improvement in ADHD symptoms, day-to-day functioning, and sleep symptoms were all reported to be at least somewhat important by the majority of caregivers, though they viewed improvements in ADHD symptoms and functioning as more important than sleep symptoms. Among sleep symptoms, longer duration of sleep and maintaining sleep throughout the night were rated as particularly important areas for improvement. The median MCID endorsed by caregivers was 30 min for sleep onset, earlier bedtime, and later waketime, and 48 min for total sleep time; and the median MCID for ADHD symptoms, emotional functioning, and physical health was 50% improvement. Severity of ADHD symptoms and sleep difficulties were positively correlated with caregiver ratings of the importance of improvement across most areas and with the magnitude of the MCID. CONCLUSION: The variability in patient preferences and priorities found in this study highlights the importance of explicitly addressing these issues at the start of treatment and of accounting for them in treatment-focused research.