Matthew J Khayata1, Samantha Farley2,3, J Kelly Davis3, Christoph P Hornik1,4, Bryce B Reeve4,5, Aruna Rikhi4, Amy A Gelfand6, Christina L Szperka7, Shirley Kessel8, Tara Pezzuto9, Alex Hammett4, Monica E Lemmon1,5. 1. Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina, USA. 2. School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA. 3. Fuqua School of Business, Duke University, Durham, North Carolina, USA. 4. Duke Clinical Research Institute, Duke University School of Medicine, Durham, North Carolina, USA. 5. Department of Population Health Sciences, Duke University School of Medicine, Durham, North Carolina, USA. 6. Department of Neurology, UCSF Child & Adolescent Headache Program, San Francisco, California, USA. 7. Department of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA. 8. Miles for Migraine, Lafayette Hill, Pennsylvania, USA. 9. Nemours Neurology Headache Program, Alfred I. Dupont Hospital for Children, Wilmington, Delaware, USA.
Abstract
OBJECTIVE: The objective of this study was to describe treatment preferences and perceived quality of existing outcome measures among children and adolescents with migraine and their caregivers. BACKGROUND: Across disciplines, there is increasing recognition of the value of direct input from stakeholders. Little empirical work has been done to determine what outcomes matter most to pediatric patients with migraine and their caregivers. METHODS: In this qualitative study, we recruited participants from the multicenter, prospective Pediatric Migraine Registry. We used stratified purposive sampling to recruit children and adolescents of varied ages and headache frequency. Patients with migraine and their caregivers completed semistructured interviews targeting treatment preferences and perceived quality of existing outcome measures. Emergent themes and subthemes were identified using conventional content analysis. RESULTS: Thirty dyads of children/adolescents and their caregivers were enrolled and completed 59 interviews (n = 29 children/adolescent interviews and n = 30 caregiver interviews). Three themes emerged. (1) Symptom relief: Looking beyond headache resolution: Participants described the value of outcomes in addition to pain relief, including a reduction in migraine intensity and improvement in non-pain symptoms. (2) Trade-offs between side effects and relief: Participants described cost-benefit analyses that can occur with headache treatment and acknowledged the impact of drug side effects on daily life and medication adherence. (3) Child-centered treatment: Participants described medication attributes salient to the pediatric context, including age-appropriate routes of administration and adequate safety data. CONCLUSIONS: Children, adolescents, and caregivers impacted by migraine value outcomes in addition to traditionally studied migraine endpoints. Participants valued decreased pain severity, even in the absence of pain resolution. Participants also prioritized the absence of side effects and key medication attributes, including fast onset and age-appropriate routes of administration. These results highlight an opportunity to design patient-centered clinical trials, develop drugs, and support product labeling that align with the outcomes valued most by children and adolescents with migraine and their caregivers.
OBJECTIVE: The objective of this study was to describe treatment preferences and perceived quality of existing outcome measures among children and adolescents with migraine and their caregivers. BACKGROUND: Across disciplines, there is increasing recognition of the value of direct input from stakeholders. Little empirical work has been done to determine what outcomes matter most to pediatric patients with migraine and their caregivers. METHODS: In this qualitative study, we recruited participants from the multicenter, prospective Pediatric Migraine Registry. We used stratified purposive sampling to recruit children and adolescents of varied ages and headache frequency. Patients with migraine and their caregivers completed semistructured interviews targeting treatment preferences and perceived quality of existing outcome measures. Emergent themes and subthemes were identified using conventional content analysis. RESULTS: Thirty dyads of children/adolescents and their caregivers were enrolled and completed 59 interviews (n = 29 children/adolescent interviews and n = 30 caregiver interviews). Three themes emerged. (1) Symptom relief: Looking beyond headache resolution: Participants described the value of outcomes in addition to pain relief, including a reduction in migraine intensity and improvement in non-pain symptoms. (2) Trade-offs between side effects and relief: Participants described cost-benefit analyses that can occur with headache treatment and acknowledged the impact of drug side effects on daily life and medication adherence. (3) Child-centered treatment: Participants described medication attributes salient to the pediatric context, including age-appropriate routes of administration and adequate safety data. CONCLUSIONS: Children, adolescents, and caregivers impacted by migraine value outcomes in addition to traditionally studied migraine endpoints. Participants valued decreased pain severity, even in the absence of pain resolution. Participants also prioritized the absence of side effects and key medication attributes, including fast onset and age-appropriate routes of administration. These results highlight an opportunity to design patient-centered clinical trials, develop drugs, and support product labeling that align with the outcomes valued most by children and adolescents with migraine and their caregivers.
Authors: Ronald Steingard; Sarper Taskiran; Daniel F Connor; John S Markowitz; Mark A Stein Journal: J Child Adolesc Psychopharmacol Date: 2019-04-30 Impact factor: 2.576
Authors: Christoph P Hornik; Amy A Gelfand; Christina L Szperka; Tara Pezzuto; Amanda Utevsky; Shirley Kessel; Susan McCune; John J Alexander; Daniel K Benjamin; Michael Cohen-Wolkowiez Journal: Headache Date: 2019-11-22 Impact factor: 5.887
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