title: Treatment adherence and transitioning youth in pediatric multiple sclerosis.
abstract: 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.
  
  
  OBJECTIVE
  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).
authors: University of California, San Francisco, CA, UnitedStates
authors: Sabeen
authors: S
authors: Lulu
authors: Laura
authors: L
authors: Julian
authors: Emma
authors: E
authors: Shapiro
authors: Kyr
authors: K
authors: Hudson
authors: Emmanuelle
authors: E
authors: Waubant
mesh_terms: D000293:Adolescent; D001294:Attitude to Health; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D009103:Multiple Sclerosis / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy*; D010349:Patient Compliance; D010372:Pediatrics / Q000379:methods; D011446:Prospective Studies; D011594:Psychometrics; D011788:Quality of Life; D012495:San Francisco; D012648:Self Care; D011795:Surveys and Questionnaires