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Treatment adherence and transitioning youth in pediatric multiple sclerosis.

ABSTRACT: 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.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.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.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).

SUBMITTER: Lulu S

PROVIDER: S-EPMC4361811 | biostudies-literature | 2014 Nov

REPOSITORIES: biostudies-literature

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Treatment adherence and transitioning youth in pediatric multiple sclerosis.

Lulu Sabeen S Julian Laura L Shapiro Emma E Hudson Kyr K Waubant Emmanuelle E

Multiple sclerosis and related disorders 20141101 6

<h4>Background</h4>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.<h4>Objectives</h4>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.<h4>Methods< ...[more]

PMID: 25798373

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Project description:BackgroundYouth living with HIV (YLHIV) in Sub-Saharan African (SSA) are less likely to adhere to antiretroviral therapy (ART) and other health-related regimens. As a consequence, YLHIV are not only at risk for health problems and mental health comorbidities, but are also at risk for cognitive deficits, including in areas of memory and executive functioning. The Suubi+Adherence study followed 702 adolescents (10-16 years of age) receiving bolstered standard of care and a family economic empowerment intervention comprising an incentivized youth financial savings account (YSA) augmented with financial literacy training (FLT) and peer mentorship. The study findings pointed to superior short-term viral suppression and positive adolescent health and mental health functioning among participants receiving the intervention. The original group of adolescents who received Suubi+Adherence are now transitioning into young adulthood. This paper presents a protocol for the follow-up phase titled Suubi+Adherence Round 2.MethodsThe original cohort in Suubi+Adherence will be tracked for an additional five years (2020-2025). Specifically, the long term follow-up will allow to: 1) ascertain the extent to which the short term outcomes identified in the first 6 years of the intervention are maintained as the same group transitions through young adulthood; and 2) address new scientific questions regarding ART adherence; HIV care engagement; protective health behaviors; and the potential of FEE to mitigate the development of HIV-associated neurocognitive disorders in YLHIV. Additionally, the team examines the potential mechanisms through which the observed long-term outcomes happen. Moreover, the Suubi+Adherence-Round 2 adds a qualitative component and extends the cost effectiveness component.DiscussionGuided by asset and human development theories, Suubi+Adherence-R2 will build on the recently concluded Suubi+Adherence study to conduct one of the largest and longest running studies of YLHIV in SSA as they transition into young adulthood. The study will address new scientific questions regarding long-term ART adherence, HIV care engagement, protective health behaviors, and the potential of FEE to mitigate the development of HIV-associated neurocognitive disorders in YLHIV. The findings may inform efforts to improve HIV care among Uganda's YLHIV, with potential replicability in other low-resource countries.Trial registrationClinicalTrials.gov , ID: NCT01790373.

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Treatment adherence and transitioning youth in pediatric multiple sclerosis.

Publications

Treatment adherence and transitioning youth in pediatric multiple sclerosis.

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