Evaluating patient and family preferences for acute and preventive pediatric headache treatment

Abstract

AbstractObjectiveTo describe acute and preventive treatment preferences among youth with migraine and their parents/guardians, and to describe the degree of youth–parent/guardian preference agreement.BackgroundHeadache disorders are common in youth, but little is known about patient and family preferences for headache treatments and outcomes.MethodsIn this cross‐sectional survey, a headache treatment preferences questionnaire was co‐created with stakeholders, piloted, and distributed to consenting youth with migraine aged 9–18 years and parents/guardians at a tertiary care headache clinic in western Canada. Response data were summarized for youth and parents/guardians separately, and agreement rates within a youth–parent/guardian pair were compared to a hypothesized agreement rate of 80% for the primary questionnaire items.ResultsSeventy‐two youth and n = 94 parents/guardians participated, with n = 63 in youth–parent/guardian pairs. Freedom from pain and rapid relief, and reducing pain severity and headache frequency were top acute and preventive treatment priorities, respectively. More than 90% (69/72) agreed that ≥ 50% reduction in headache frequency was a good target. For both acute and preventive interventions, swallowed pill–based options were most often selected as the preferred first‐line treatment, with neuromodulation selected as the preferred second‐line treatment. The level of agreement within youth–parent/guardian pairs on preferred treatment modalities was lower than hypothesized for acute (63% [40/63], 95% confidence interval [CI] = 52–75%, χ2 = 10.73, p = 0.001) but not for preventive treatment (73% [46/63], 95% CI = 62–84%, χ2 = 1.92, p = 0.166). Regarding which treatment modalities were perceived as most effective, youth–parent agreement was lower than hypothesized for both acute (48% [30/63], 95% CI = 35–60%, χ2 = 41.29, p < 0.001) and preventive treatment (46% [29/63], 95% CI = 34–58%, χ2 = 45.43, p < 0.001).ConclusionYouth and family preferences aligned qualitatively, but sometimes diverged quantitatively, from typical clinical trial outcomes. The level of agreement within youth–parent/guardian pairs on treatment preferences and perceptions was low. Clinicians should consider both perspectives as they may be divergent.