Dataset Information

Adherence barriers in pediatric epilepsy: From toddlers to young adults.

ABSTRACT: OBJECTIVE:The objectives of this study were to examine the continuity of adherence barriers across stages of development in pediatric epilepsy and to assess the differential influence of barriers on several important clinical outcomes from early childhood to young adulthood, including adherence, seizures, and health-related quality of life (HRQOL). METHOD:A developmentally representative sample of youth 2-25years with epilepsy was obtained by combining data from five different studies. A total of 269 caregivers and 77 adolescents and young adults were included in this investigation. Participants completed measures of adherence barriers and HRQOL. An electronic monitoring system was used to assess adherence to the primary antiepileptic drug over 30days. The prevalence of individual barriers across development and their relative importance as predictors of clinical outcomes were examined. RESULTS:Adherence barriers are characterized by both continuity and discontinuity from early childhood to early adulthood. Barriers such as disliking the taste of medication, parent forgetfulness, and refusal to take medications were significantly more salient during certain developmental periods. No significant differences across age groups were found for other barriers, including difficulty getting to the pharmacy and embarrassment. Certain adherence barriers, such as running out of medications, were more important to particular clinical outcomes despite being low prevalence. Adherence barriers differentially predicted adherence, seizure control, and HRQOL based on developmental stage. CONCLUSION:Routine assessment of adherence barriers is imperative from toddlerhood to young adulthood given that the prevalence of barriers and their relative influence on important health outcomes vary by developmental stage. Adherence intervention efforts should be targeted, developmentally tailored, and focused on those barriers that are most predictive of poor outcomes for a given developmental period.

SUBMITTER: Gutierrez-Colina AM

PROVIDER: S-EPMC6816538 | biostudies-literature | 2018 Mar

REPOSITORIES: biostudies-literature

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Adherence barriers in pediatric epilepsy: From toddlers to young adults.

Gutierrez-Colina Ana M AM Smith Aimee W AW Mara Constance A CA Modi Avani C AC

Epilepsy & behavior : E&B 20180209

<h4>Objective</h4>The objectives of this study were to examine the continuity of adherence barriers across stages of development in pediatric epilepsy and to assess the differential influence of barriers on several important clinical outcomes from early childhood to young adulthood, including adherence, seizures, and health-related quality of life (HRQOL).<h4>Method</h4>A developmentally representative sample of youth 2-25years with epilepsy was obtained by combining data from five different stu ...[more]

PMID: 29433948

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Project description:BACKGROUND:Studies from sub-Saharan Africa (SSA) document how barriers to ART adherence present additional complications among adolescents and young adults living with HIV. We qualitatively explored barriers to ART adherence in Uganda among individuals age 14-24 to understand the unique challenges faced by this age group. METHODS:We conducted focus group (FG) discussions with Community Advisory Board members (n = 1), health care providers (n = 2), and male and female groups of adolescents age 14-17 (n = 2) and youth age 18-24 (n = 2) in Kampala, Uganda. FGs were transcribed verbatim and translated from Luganda into English. Two investigators independently reviewed all transcripts, developed a detailed codebook, achieved a pooled Cohen's Kappa of 0.79 and 0.80, and used a directed content analysis to identify key themes. RESULTS:Four barriers to ART adherence emerged: 1) poverty limited adolescents' ability to buy food and undercut efforts to become economically independent in their transition from adolescence to adulthood; 2) school attendance limited their privacy, further disrupting ART adherence; 3) family support was unreliable, and youth often struggled with a constant change in guardianship because they had lost their biological parents to HIV. In contrast peer influence, especially among HIV-positive youth, was strong and created an important network to support ART adherence; 4) the burden of taking multiple medications daily frustrated youth, often leading to so-called 'drug holidays.' Adolescent and youth-specific issues around disclosure emerged across three of the four barriers. CONCLUSIONS:To be effective, programs and policies to improve ART adherence among youth in Uganda must address the special challenges that adolescents and young adults confront in achieving optimal adherence. For example, training on budgeting and savings practices could help promote their transition to financial independence. School staff could develop strategies to help students take their medications consistently and confidentially. While challenging to extend the range of services provided by HIV clinics, successful efforts will require engaging the family, peers, and larger community of health and educational providers to support adolescents and young adults living with HIV to live longer and healthier lives. TRIAL REGISTRATION:ClinicalTrials.gov Identifier: NCT02514356 . Registered August 3, 2015.

Project description:OBJECTIVES:Although the American Academy of Pediatrics recommends screening for autism spectrum disorder (ASD) for all young children, disparities in ASD diagnosis and intervention in minority children persist. One potential contributor to disparities could be whether physicians take different actions after an initial positive screen based on patient demographics. This study estimated factors associated with physicians completing the follow-up interview for the Modified Checklist for Autism in Toddlers with Follow-up (M-CHAT-F), and referring children to diagnostic services, audiology, and Early Intervention (EI) immediately after a positive screen. METHODS:Children seen in a large primary care network that has implemented universal ASD screening were included if they screened positive on the M-CHAT parent questionnaire during a 16-30 month well child visit (N = 2882). Demographics, screening results, and referrals were extracted from the electronic health record. RESULTS:Children from lower-income families or on public insurance were more likely to have been administered the follow-up interview. Among children who screened positive, 26% were already in EI, 31% were newly referred to EI, 11% were referred each to audiology and for comprehensive ASD evaluation. 40.2% received at least one recommended referral; 3.7% received all recommended referrals. In adjusted multivariable models, male sex, white versus black race, living in an English-speaking household, and having public insurance were associated with new EI referral. Male sex, black versus white race, and lower household income were associated with referral to audiology. Being from an English-speaking family, white versus Asian race, and lower household income were associated with referral for ASD evaluation. A concurrent positive screen for general developmental concerns was associated with each referral. CONCLUSIONS:We found low rates of follow-up interview completion and referral after positive ASD screen, with variations in referral by sex, language, socio-economic status, and race. Understanding pediatrician decision-making about ASD screening is critical to improving care and reducing disparities.

Dataset Information

Adherence barriers in pediatric epilepsy: From toddlers to young adults.

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Adherence barriers in pediatric epilepsy: From toddlers to young adults.

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