title: Risk factors for non-adherence to disease-modifying therapy in pediatric multiple sclerosis.
abstract: Adherence to disease-modifying therapies (DMTs) in pediatric multiple sclerosis (MS) is not well understood. We examined the prevalence and risk factors for poor adherence in pediatric MS.
  
  
  
  This cross-sectional study recruited youth with MS from 12 North American pediatric MS clinics. In addition to pharmacy-refill data, patients and parents completed self-report measures of adherence and quality of life. Additionally, patients completed measures of self-efficacy and well-being. Factor analysis and linear regression methods were used.
  
  
  
  A total of 66 youth (mean age, 15.7 years) received MS DMTs (33% oral, 66% injectable). Estimates of poor adherence (i.e. missing >20% of doses) varied by source: pharmacy 7%, parent 14%, and patient 41%. Factor analysis yielded two composites: adherence summary and parental involvement in adherence. Regressions revealed that patients with better self-reported physical functioning were more adherent. Parents were more likely to be involved in adherence when their child had worse parent-reported PedsQL School Functioning and lower MS Self-Efficacy Control. Oral DMTs were associated with lesser parental involvement in adherence.
  
  
  
  Rates of non-adherence varied by information source. Better self-reported physical functioning was the strongest predictor of adherence. Parental involvement in adherence was associated with worse PedsQL School Functioning and lower MS Self-Efficacy-measured confidence in controlling MS.
authors.affiliation: DeltaQuest Foundation, Inc., Concord, MA, USA/Departments of Medicine and Orthopaedic Surgery, School of Medicine, Tufts University, Boston, MA, USA.
authors.forename: Carolyn E
authors.initials: CE
authors.lastname: Schwartz
authors.affiliation: Department of Neuroscience and Mental Health, Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.
authors.forename: Stephanie A
authors.initials: SA
authors.lastname: Grover
authors.affiliation: DeltaQuest Foundation, Inc., Concord, MA, USA.
authors.forename: Victoria E
authors.initials: VE
authors.lastname: Powell
authors.affiliation: Hospital for Sick Children, Toronto, ON, Canada/Division of Neurology and Division of Neuroscience and Mental Health, Department of Pediatrics, Research Institute, Hospital for Sick Children, Toronto, ON, Canada.
authors.forename: Austin
authors.initials: A
authors.lastname: Noguera
authors.affiliation: Division of Neurology, Department of Pediatrics, Cumming School of Medicine, Alberta Children's Hospital, University of Calgary, Calgary, AB, Canada.
authors.forename: Jean K
authors.initials: JK
authors.lastname: Mah
authors.affiliation: Departments of Neurology and Pediatrics, St. Louis Children's Hospital, Washington University School of Medicine in St. Louis, St. Louis, MO, USA.
authors.forename: Soe
authors.initials: S
authors.lastname: Mar
authors.affiliation: Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.
authors.forename: Lauren
authors.initials: L
authors.lastname: Mednick
authors.affiliation: Division of Neurology, Children's Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
authors.forename: Brenda L
authors.initials: BL
authors.lastname: Banwell
authors.affiliation: Division of Child Neurology, Department of Pediatrics, School of Medicine, University of Pittsburgh, Pittsburgh, PA, USA.
authors.forename: Gulay
authors.initials: G
authors.lastname: Alper
authors.affiliation: Department of Neurology, The Mellen Center, Cleveland Clinic, Cleveland, OH, USA.
authors.forename: Mary
authors.initials: M
authors.lastname: Rensel
authors.affiliation: Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.
authors.forename: Mark
authors.initials: M
authors.lastname: Gorman
authors.affiliation: Division of Neurology, Children's Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
authors.forename: Amy
authors.initials: A
authors.lastname: Waldman
authors.affiliation: Departments of Neurology and Pediatrics, University of Colorado Denver, Denver, CO, USA.
authors.forename: Teri
authors.initials: T
authors.lastname: Schreiner
authors.affiliation: Department of Neurology, University of San Francisco, San Francisco, CA, USA.
authors.forename: Emmanuelle
authors.initials: E
authors.lastname: Waubant
authors.affiliation: Division of Neurology and Department of Neuroscience and Mental Health, Department of Pediatrics, Research Institute, Hospital for Sick Children, Toronto, ON, Canada/Faculty of Medicine, The University of Toronto, Toronto, ON, Canada.
authors.forename: E Ann
authors.initials: EA
authors.lastname: Yeh
mesh_terms: D000293:Adolescent; D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D007155:Immunologic Factors / Q000008:administration & dosage*; D008297:Male; D009103:Multiple Sclerosis / Q000188:drug therapy* / Q000523:psychology; D009656:North America; D010290:Parents; D012307:Risk Factors; D020377:Self Efficacy; D057566:Self Report; D016903:Drug Monitoring
chemical_list: D007155:Immunologic Factors
keywords: Pediatric multiple sclerosis; adherence; parent; protective factors; psychosocial; quality of life