Multicenter Study

. 2018 Feb;24(2):175-185.

doi: 10.1177/1352458517695469. Epub 2017 Feb 1.

Risk factors for non-adherence to disease-modifying therapy in pediatric multiple sclerosis

Carolyn E Schwartz¹, Stephanie A Grover², Victoria E Powell³, Austin Noguera⁴, Jean K Mah⁵, Soe Mar⁶, Lauren Mednick⁷, Brenda L Banwell⁸, Gulay Alper⁹, Mary Rensel¹⁰, Mark Gorman⁷, Amy Waldman⁸, Teri Schreiner¹¹, Emmanuelle Waubant¹², E Ann Yeh¹³

Affiliations

¹ DeltaQuest Foundation, Inc., Concord, MA, USA/Departments of Medicine and Orthopaedic Surgery, School of Medicine, Tufts University, Boston, MA, USA.
² Department of Neuroscience and Mental Health, Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.
³ DeltaQuest Foundation, Inc., Concord, MA, USA.
⁴ 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.
⁵ Division of Neurology, Department of Pediatrics, Cumming School of Medicine, Alberta Children's Hospital, University of Calgary, Calgary, AB, Canada.
⁶ Departments of Neurology and Pediatrics, St. Louis Children's Hospital, Washington University School of Medicine in St. Louis, St. Louis, MO, USA.
⁷ Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.
⁸ Division of Neurology, Children's Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
⁹ Division of Child Neurology, Department of Pediatrics, School of Medicine, University of Pittsburgh, Pittsburgh, PA, USA.
¹⁰ Department of Neurology, The Mellen Center, Cleveland Clinic, Cleveland, OH, USA.
¹¹ Departments of Neurology and Pediatrics, University of Colorado Denver, Denver, CO, USA.
¹² Department of Neurology, University of San Francisco, San Francisco, CA, USA.
¹³ 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.

PMID: 28273780
PMCID: PMC7370309
DOI: 10.1177/1352458517695469

Multicenter Study

Risk factors for non-adherence to disease-modifying therapy in pediatric multiple sclerosis

Carolyn E Schwartz et al. Mult Scler. 2018 Feb.

. 2018 Feb;24(2):175-185.

doi: 10.1177/1352458517695469. Epub 2017 Feb 1.

Authors

Affiliations

¹ DeltaQuest Foundation, Inc., Concord, MA, USA/Departments of Medicine and Orthopaedic Surgery, School of Medicine, Tufts University, Boston, MA, USA.
² Department of Neuroscience and Mental Health, Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.
³ DeltaQuest Foundation, Inc., Concord, MA, USA.
⁴ 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.
⁵ Division of Neurology, Department of Pediatrics, Cumming School of Medicine, Alberta Children's Hospital, University of Calgary, Calgary, AB, Canada.
⁶ Departments of Neurology and Pediatrics, St. Louis Children's Hospital, Washington University School of Medicine in St. Louis, St. Louis, MO, USA.
⁷ Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.
⁸ Division of Neurology, Children's Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
⁹ Division of Child Neurology, Department of Pediatrics, School of Medicine, University of Pittsburgh, Pittsburgh, PA, USA.
¹⁰ Department of Neurology, The Mellen Center, Cleveland Clinic, Cleveland, OH, USA.
¹¹ Departments of Neurology and Pediatrics, University of Colorado Denver, Denver, CO, USA.
¹² Department of Neurology, University of San Francisco, San Francisco, CA, USA.
¹³ 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.

PMID: 28273780
PMCID: PMC7370309
DOI: 10.1177/1352458517695469

Abstract

Background: 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.

Methods: 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.

Results: 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.

Conclusion: 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.

Trial registration: ClinicalTrials.gov NCT02234713.

Keywords: Pediatric multiple sclerosis; adherence; parent; protective factors; psychosocial; quality of life.

PubMed Disclaimer

Conflict of interest statement

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

**Figure 1.**
Proportion non-adherent by data source.

**Figure 2.**
Comparison of injectable versus oral DMT on adherence outcomes.

See this image and copyright information in PMC

References

1. Yeh EA, Waubant E, Krupp LB, et al. Multiple sclerosis therapies in pediatric patients with refractory multiple sclerosis. Arch Neurol 2011; 68(4): 437–444. - PubMed
1. ong J, Gomes T, Mamdani M, et al. Adherence to multiple sclerosis disease-modifying therapies in Ontario is low. Can J Neurol Sci 2011; 38(3): 429–433. - PubMed
1. Treadaway K, Cutter G, Salter A, et al. Factors that influence adherence with disease-modifying therapy in MS. J Neurol 2009; 256(4): 568–576. - PubMed
1. Devonshire V, Lapierre Y, Macdonell R, et al. The Global Adherence Project (GAP): A multicenter observational study on adherence to disease-modifying therapies in patients with relapsing-remitting multiple sclerosis. Eur J Neurol 2011; 18(1): 69–77. - PubMed
1. Lafata JE, Cerghet M, Dobie E, et al. Measuring adherence and persistence to disease-modifying agents among patients with relapsing emitting multiple sclerosis. J Am Pharm Assoc 2008; 48(6): 752–757. - PubMed

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K23 NS069806/NS/NINDS NIH HHS/United States

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Risk factors for non-adherence to disease-modifying therapy in pediatric multiple sclerosis

Affiliations

Risk factors for non-adherence to disease-modifying therapy in pediatric multiple sclerosis

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

MeSH terms

Substances

Associated data

Grants and funding

LinkOut - more resources

Full Text Sources

Other Literature Sources

Medical