Alison Pritchard, Ph.D., on the treatment expectation gap in pediatric ADHD

Caregivers of children with ADHD and sleep problems tend to place more weight on improving daytime ADHD symptoms than on improving sleep, and they expect treatment gains larger than current therapies typically deliver, according to a survey study published in the Journal of Attention Disorders. Alison Pritchard, Ph.D., a child clinical psychologist and co-director of the Center for Neuropsychological and Psychological Assessment at Kennedy Krieger Institute in Baltimore, was the lead author.

The study, ‘What Matters to Caregivers of Youth With ADHD: Defining the Minimum Clinically Important Difference for Sleep Treatment,’ surveyed 100 caregivers in the waiting area of an outpatient department where children were being seen for psychological or neuropsychological evaluation. Approximately half of the families had commercial insurance and about half used medical assistance. ADHD and sleep symptom severity did not differ by income, and neither did caregivers’ treatment priorities or the amount of improvement they said they would need to see.

Caregivers’ expectations exceeded what current treatments typically achieve. The median improvement caregivers wanted in the time it takes their child to fall asleep was 30 minutes, while the best available medication or behavioral treatments for sleep onset difficulties produce an average improvement of approximately 20 minutes, Pritchard said. Caregivers also wanted ADHD symptoms reduced by roughly half, a magnitude that even stimulant medications such as Ritalin and Adderall, the most effective treatments available for ADHD symptoms, do not typically reach.

In this interview with Managed Healthcare Executive, Pritchard explains how ADHD and sleep problems can feed a cycle in which each makes the other worse. Many children with ADHD have difficulty with falling asleep because they cannot slow their thoughts at bedtime, while others wake during the night and have trouble falling back asleep or are groggy and slow to wake for school in the morning. She also points to experimental and longitudinal research suggesting that insufficient or poor-quality sleep worsens attention, a link she said caregivers may not fully recognize when they rank daytime symptoms above sleep.

Pritchard said the mismatch between what families expect and what treatment can deliver puts the responsibility on clinicians to set realistic expectations at the outset. Providers should tell caregivers that treatment is likely to help but that “it’s not going to make the symptoms go away entirely,” she said, so that neither families nor clinicians end up frustrated.