Dataset Information

Key predictors of the need for a family-focused pediatric epilepsy adherence intervention.

ABSTRACT:

Objective

Nonadherence to antiseizure drugs is a significant problem in pediatric epilepsy and is linked to increased morbidity and mortality, clinically unnecessary medication changes, and increased health care costs. Family interventions can improve adherence. However, it is challenging to determine which families will struggle with nonadherence and require intervention. This study aims to identify specific parent, family, child, and medical factors that predict which families most need family-based adherence interventions.

Methods

Families enrolled in a randomized clinical trial of a family-based adherence intervention completed measures assessing parent, family, child, and medical factors. Families also used an electronic adherence monitor. Adherence of ≥95% was considered high adherence (not requiring intervention), and <95% was considered suboptimal adherence (requiring intervention). We conducted a stepwise logistic regression analysis to assess demographic, medical, child, family, and parent predictors of membership to the suboptimal adherence group.

Results

Of the 200 families of children with new onset epilepsy who enrolled, 177 families completed the study. Of these families, 121 (68%) were in the high adherence group and 56 (32%) were in the suboptimal adherence group. Families with lower socioeconomic status (SES), children of color, lower general family functioning, and more parent distress were more likely to be in the suboptimal adherence group.

Significance

We identified that parent and family factors, as well as sociodemographic characteristics, predicted membership in the suboptimal adherence group. It is critical to find creative and practical solutions for assessing and intervening upon key adherence predictors. These may include streamlined screening for parental distress and family functioning, as well as recognition that families of lower SES and communities of color may be at heightened risk for suboptimal adherence.

SUBMITTER: Bakula DM

PROVIDER: S-EPMC9546343 | biostudies-literature | 2022 Aug

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Key predictors of the need for a family-focused pediatric epilepsy adherence intervention.

Bakula Dana M DM Junger Katherine W KW Guilfoyle Shanna M SM Mara Constance A CA Modi Avani C AC

Epilepsia 20220603 8

<h4>Objective</h4>Nonadherence to antiseizure drugs is a significant problem in pediatric epilepsy and is linked to increased morbidity and mortality, clinically unnecessary medication changes, and increased health care costs. Family interventions can improve adherence. However, it is challenging to determine which families will struggle with nonadherence and require intervention. This study aims to identify specific parent, family, child, and medical factors that predict which families most nee ...[more]

PMID: 35596620

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Project description:ObjectiveThe 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).MethodA 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.ResultsAdherence 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.ConclusionRoutine 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.

Project description:ImportanceA timely, well-coordinated transfer from pediatric- to adult-focused primary care is an important component of high-quality health care, especially for youths with chronic health conditions. Current recommendations suggest that primary-care transfers for youths occur between 18 and 21 years of age. However, the current epidemiology of transfer timing is unknown.ObjectiveTo examine the timing of transfer to adult-focused primary care providers (PCPs), the time between last pediatric-focused and first adult-focused PCP visits, and the predictors of transfer timing.Design, setting, and participantsRetrospective cohort study of patients insured by Harvard Pilgrim Health Care (HPHC), a large not-for-profit health plan. Our sample included 60 233 adolescents who were continuously enrolled in HPHC from 16 to at least 18 years of age between January 2000 and December 2012. Pediatric-focused PCPs were identified by the following provider specialty types, but no others: pediatrics, adolescent medicine, or pediatric nurse practitioner. Adult-focused PCPs were identified by having any provider type that sees adult patients. Providers with any specialty provider designation (eg, gastroenterology or gynecology) were not considered PCPs.Main outcomes and measuresWe used multivariable Cox proportional hazards regression to model age at first adult-focused PCP visit and time from the last pediatric-focused to the first adult-focused PCP visit (gap) for any type of office visit and for those that were preventive visits.ResultsYounger age at transfer was observed for female youths (hazard ratio [HR], 1.32 [95% CI, 1.29-1.36]) who had complex (HR, 1.06 [95% CI, 1.01-1.11]) or noncomplex (HR, 1.08 [95% CI, 1.05-1.12]) chronic conditions compared with those who had no chronic conditions. Transfer occurred at older ages for youths who lived in lower-income neighborhoods compared with those who lived in higher-income neighborhoods (HR, 0.89 [95% CI, 0.83-0.95]). The gap between last pediatric-focused to first adult-focused PCP visit was shorter for female youths than male youths (HR, 1.57 [95% CI, 1.53-1.61]) and youths with complex (HR, 1.35 [95% CI, 1.28-1.41]) or noncomplex (HR, 1.24 [95% CI, 1.20-1.28]) chronic conditions. The gap was longer for youths living in lower-income neighborhoods than for those living in higher-income neighborhoods (HR, 0.80 [95% CI, 0.75-0.85]). Multivariable models showed an adjusted median age at transfer of 21.8 years for office visits and 23.1 years for preventive visits and an adjusted median gap length of 20.5 months for office visits and 41.6 months for preventive visits.Conclusions and relevanceMost youths are transferring care later than recommended and with gaps of more than a year. While youths with chronic conditions have shorter gaps, they may need even shorter transfer intervals to ensure continuous access to care. More work is needed to determine whether youths are experiencing clinically important lapses in care or other negative health effects due to the delayed timing of transfer.

Project description:BackgroundNonadherence to treatment remains high among patients with musculoskeletal conditions with negative impact on the treatment outcomes, use of personal and cost of care. An active knowledge translation (KT) strategy may be an effective strategy to support practice change. The purpose of this study was to deliver a brief, interactive, multifaceted and targeted KT program to improve physiotherapist knowledge and confidence in performing adherence enhancing activities related to risk, barriers, assessment and interventions.MethodsWe utilised a 2-phase approach in this KT project. Phase 1 involved the development of an adherence tool kit following a synthesis of the literature and an iterative process involving 47 end-users. Clinicians treating patients with musculoskeletal conditions were recruited from two Physiotherapy and Occupational therapy national conferences in Canada. The intervention, based on the acronym SIMPLE TIPS was tested on 51 physiotherapists in phase 2. A pre- and post-repeated measures design was used in Phase 2. Graham's knowledge-to-action cycle was used as the conceptual framework. Participants completed a pre-intervention assessment, took part in a 1-h educational session and completed a post-intervention assessment. A questionnaire was used to measure knowledge of evidence-based treatment adherence barriers, interventions and measures and confidence to perform evidence-based adherence practice activities. Data was analysed using descriptive statistics (frequency and percentage), Fisher's exact test and Wilcoxon Sign-Ranked tests.ResultsBarriers and facilitators of adherence were identified under three domains (therapist, patient, health system) in phase 1. Seventy percent of the participants completed the questionnaire. Results indicated that 46.8% of respondents explored barriers including the use of behaviour change strategies and 45.7% reported that they measured adherence but none reported the use of validated outcomes. A significant improvement in post-self-efficacy scores for the four adherence enhancing activities was observed immediately after the workshop.ConclusionThe use of a multi-modal KT intervention is feasible in an educational setting. A brief interactive educational session was successfully implemented using a toolkit and caused a significant increase in physiotherapists' knowledge and confidence at performing adherence enhancing activities in the very short-term. Further testing of SIMPLE TIPS on long-term adherence practices could help advance best practices specific to treatment adherence in MSK practice.

Dataset Information

Key predictors of the need for a family-focused pediatric epilepsy adherence intervention.

Objective

Methods

Results

Significance

Publications

Key predictors of the need for a family-focused pediatric epilepsy adherence intervention.

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