Treatment adherence and transitioning youth in pediatric multiple sclerosis

Mult Scler Relat Disord. 2014 Nov;3(6):689-95. doi: 10.1016/j.msard.2014.09.088.


Background: Transitioning youth with multiple sclerosis (MS) represent a vulnerable group to potentially poor outcomes. It is unknown how pediatric MS patients transition into adult care.

Objectives: To describe self-management skills that include adherence to disease-modifying therapies, quality of life measures, illness perception, transition readiness and healthcare skills assessments in patients with pediatric MS and associations with clinical and cognitive outcomes.

Methods: This is a prospective cross-sectional study at the pediatric MS center and transitional MS clinic at the University of California, San Francisco. Patients and one of their parents completed validated surveys for self-management skills. Non-adherence is defined as not taking their medication more than 20% of the time in the past 1 month. Wilcoxin matched-pairs rank test and McNemar's tests were used for comparison of patient and parent responses. Univariate and multivariate regression models were used for analyses adjusting for disease duration and socio-economic status.

Results: Thirty patients were enrolled with a mean (+/-SD) age of 15.8 years+/-2.8, 53% was female and 47% Hispanic. The rate of non-adherence was 37%. The most common reason for non-adherence was forgetting to take their medication reported in 50% of patients. In adjusted regression models, higher EDSS was associated with a lower score on patient's quality of life (13 points decrease, 95% CI 6–18, p<0.0001), and lower healthcare skills (15 points decrease, 95% CI5–26, p=0.006). Four points increase in Symbol Digit Modalities Test score was associated a 0.1 increase in transition readiness score (95% CI0.07–0.2, p=0.001) and 3.9 points increase in health care skills scores (95% CI 1.7–6, p=0.008).

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Attitude to Health
  • Cross-Sectional Studies
  • Female
  • Humans
  • Male
  • Multiple Sclerosis / epidemiology
  • Multiple Sclerosis / psychology*
  • Multiple Sclerosis / therapy*
  • Patient Compliance*
  • Pediatrics / methods
  • Prospective Studies
  • Psychometrics
  • Quality of Life
  • San Francisco
  • Self Care*
  • Surveys and Questionnaires