Caregivers of Pediatric Patients With Narcolepsy Express Their Treatment Preferences

By Rob Dillard - Last Updated: May 31, 2024

A study being presented at SLEEP 2024 in Houston, Texas, identified the most important attributes driving preference and treatment choice among caregivers of pediatric patients with narcolepsy.

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Sodium oxybate extended-release oral suspension (ON-SXB; LUMRYZ) taken once nightly is approved by the US Food and Drug Administration (FDA) to treat excessive daytime sleepiness and cataplexy in adults with narcolepsy. However, this treatment is not yet available for pediatric patients. Consequently, researchers performed a discrete choice experiment among 75 caregivers of pediatric patients (<18 years of age) with narcolepsy to discern key drivers of preferences for oxybate therapy.

The experiment consisted of 30-minute web-based surveys of adult caregivers of pediatric narcolepsy patients and prior or current use of twice-nightly SXB. Patients in the population of interest were recruited online via advocacy groups, and they indicated their preferred product overall, the product they would be more adherent to, and the product that would result in the least anxiety or stress for the pediatric patient when thinking about taking the medication. The researchers utilized a hierarchical Bayesian model to assess their findings.

A total of 88% of patients cared for were 10 to 15 years of age, most (80%) caregivers had a household income of $60,000-$120,000, and 96% of patients currently used twice-nightly SXB. According to the findings, caregivers indicated that the most important attribute driving treatment choice was dosing frequency, with once-nightly SXB preferred over twice-nightly dosing, followed by efficacy at the highest treatment dose.

Moreover, the study found that the most important attribute driving treatment adherence was the efficacy of the drug at the highest dose, followed by dosing frequency, with once-nightly SXB preferred over twice-nightly dosing. Furthermore, the most important attributes linked to less anxiety and stress were efficacy of the drug at the
highest dose and side effects.

“Among caregivers of pediatric patients with narcolepsy, efficacy and dosing frequency were identified as the most important attributes driving preference for overall treatment choice and adherence; efficacy and side effects were important for reducing patient anxiety/stress,” the researchers concluded. They added that “if approved by the FDA for pediatric patients, ON-SXB will eliminate the chronic, middle-of-the-night disruption impacting patients and caregivers.”

Reference

Ortiz L, Morse A, Wermter E, Lavender M, Brooks D, Gudeman J. Caregiver preferences for narcolepsy treatment: a discrete choice experiment. Abstract #0653. Presented at SLEEP 2024; June 1-5, 2024; Houston, Texas.

Post Tags:narcolepsy
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