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Youth with epilepsy (YWE) are at elevated risk for anxiety, yet anxiety is often undetected and understudied in this population. Most research on anxiety in YWE is based on parent proxy-report and broad-band measures with limited sensitivity. The aim of the current study was to: 1) examine rates of anxiety symptoms in YWE using a diagnosis-specific, self-report measure of anxiety symptoms, 2) assess differences in anxiety symptoms by sociodemographic and medical variables, and 3) evaluate changes in anxiety symptoms following a brief behavioral health intervention delivered within an interdisciplinary epilepsy clinic visit. As part of routine clinical care, 317 YWE [Mage=13.4+2.5 years (range 7-19 years); 54% female; 84% White: Non-Hispanic] completed the Multidimensional Anxiety Scale for Children, self-report (MASC-10), with a subset completing the MASC-10 at a second timepoint (n=139). A retrospective chart review was completed and sociodemographic, medical variables and behavioral health interventions were collected. Thirty percent of YWE endorsed elevated anxiety symptoms, with higher rates in those who were younger. YWE who received a behavioral health intervention for anxiety (n=21) demonstrated greater decreases in anxiety symptoms from Time 1 to Time 2 compared to those who did not receive a behavioral intervention (n=108). The integration of psychologists into pediatric epilepsy clinics may have allowed for early identification of anxiety symptoms, as well behavioral interventions to address these symptoms, which has the potential to decrease the need for more intensive services.
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Ansiedade , Epilepsia , Autorrelato , Humanos , Feminino , Adolescente , Masculino , Criança , Epilepsia/terapia , Epilepsia/psicologia , Epilepsia/diagnóstico , Ansiedade/terapia , Ansiedade/diagnóstico , Ansiedade/etiologia , Adulto Jovem , Escalas de Graduação Psiquiátrica , Estudos Retrospectivos , Terapia Comportamental/métodosRESUMO
Objective: Youth with bipolar spectrum disorders (BSD) are frequently prescribed second-generation antipsychotics (SGAs). Nonadherence to treatment often results in increased mood symptoms and diminished quality of life. We examined SGA adherence rates and adherence barriers among youth who have overweight/obesity and are diagnosed with BSD enrolled in a multisite pragmatic clinical trial. Methods: SGA adherence and adherence barriers at baseline via patient- and caregiver report was assessed. Adherence was defined as taking ≥70% of prescribed SGA doses in the past week. The weighted Kappa statistic was used to measure child-caregiver agreement about adherence rates, barriers, and caregiver assistance. Regression analyses were used to examine associations of caregiver assistance, age, sex, race, insurance status, dosing frequency, and number of concomitant medications with adherence. Barriers to adherence were analyzed separately for youth and their caregivers, using logistic regression to assess associations between informant-reported barriers and informant-reported adherence. Results: Participants included 1485 patients and/or caregivers. At baseline, 88.6% of patients self-reported as adherent; 92.0% of caregivers reported their child was adherent. Concordance between patients and caregivers was moderate (k = 0.42). Approximately, 50% of the sample reported no adherence barriers. Frequently endorsed barriers included forgetting, side effects, being embarrassed to take medications, and preferring to do something else. Concordance between informants regarding adherence barriers was weak (k = 0.05-0.36). Patients and caregivers who did not endorse adherence barriers reported higher adherence than those who endorsed barriers. Male sex and having once daily dosing of medications were associated with lower adherence. Discussion: One-week patient- and caregiver-reported adherence was high in this sample. Half of the sample reported adherence barriers. Most commonly endorsed barriers were forgetting, side effects, being embarrassed, and preferring to do something else. Caregivers and patients have unique perspectives regarding adherence barriers. Understanding and addressing treatment barriers in clinical practice may facilitate adherence.
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BACKGROUND: High rates of posthospitalization errors are observed in children with medical complexity (CMC). Poor parent comprehension of and adherence to complex discharge instructions can contribute to errors. Pediatrician views on common barriers and facilitators to parent comprehension and adherence are understudied. OBJECTIVE: To examine pediatrician perspectives on barriers and facilitators experienced by parents in comprehension of and adherence to inpatient discharge instructions for CMC. DESIGN, SETTINGS, AND PARTICIPANTS: We conducted a qualitative, descriptive study of attending pediatricians (n = 20) caring for CMC in inpatient settings (United States and Canada) and belonging to listservs for pediatric hospitalists/complex care providers. We used purposive/maximum variation sampling to ensure heterogeneity (e.g., hospital, region). MAIN OUTCOME AND MEASURES: A multidisciplinary team designed and piloted a semistructured interview guide with pediatricians who care for CMC. Team members conducted semistructured interviews via phone or video call. Interviews were audiorecorded and transcribed. We analyzed transcripts using content analysis; codes were derived a priori from a conceptual framework (based on the Pediatric Self-Management Model) and a preliminary transcript analysis. We applied codes and identified emerging themes. RESULTS: Pediatricians identified three themes as barriers and facilitators to discharge instruction comprehension and adherence: (1) regimen complexity, (2) access to the healthcare team (e.g., inpatient team, outpatient pediatrician, home nursing) and resources (e.g., medications, medical equipment), and (3) need for a family centered and health literacy-informed approach to discharge planning and education. Next steps include the assessment of parent perspectives on barriers and facilitators to discharge instruction comprehension and adherence for prents of CMC and the development of intervention strategies.
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Compreensão , Alta do Paciente , Humanos , Criança , Pesquisa Qualitativa , Pais , PediatrasRESUMO
OBJECTIVE: To examine the feasibility and acceptability of augmenting family-based treatment (FBT) for adolescents with anorexia nervosa (AN) or atypical anorexia nervosa (AAN) with a parent emotion coaching intervention (EC) focused on reducing parent expressed emotion. METHOD: In this pilot effectiveness trial, families of adolescents with AN/AAN exhibiting high expressed emotion received standard FBT with either (1) EC group or (2) support group (an attention control condition focused on psychoeducation). RESULTS: Forty-one adolescents with AN or AAN were recruited (88% female, Mage = 14.9 ± 1.6 years, 95% White: Non-Hispanic, 1% White: Hispanic, 1% Bi-racial: Asian). Most study adolescents were diagnosed with AN (59%) while 41% were diagnosed with AAN. Participating parents were predominantly mothers (95%). Recruitment and retention rates were moderately high (76% and 71%, respectively). High acceptability and feasibility ratings were obtained from parents and interventionists with 100% reporting the EC intervention was "beneficial"-"very beneficial." The FBT + EC group demonstrated higher parental warmth scores at post-treatment compared to the control group (standardized effect size difference, d = 1.58), which was maintained at 3-month follow-up. Finally, at post-treatment, the FBT + EC group demonstrated higher rates of full remission from AN/AAN (40%) compared to FBT + support (27%), and were nine times more likely to be weight restored by 3-month follow-up. DISCUSSION: Augmenting FBT with emotion coaching for parents with high expressed emotion is acceptable, feasible, and demonstrates preliminary effectiveness. PUBLIC SIGNIFICANCE: Family based treatment for AN/AAN is the recommended treatment for youth but families with high criticism/low warmth are less likely to respond to this treatment. Adding a parent emotion coaching group (EC) where parents learn to talk to their adolescents about tough emotions is feasible and well-liked by families.
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Anorexia Nervosa , Tutoria , Humanos , Adolescente , Feminino , Masculino , Emoções Manifestas , Anorexia Nervosa/terapia , Anorexia Nervosa/psicologia , Resultado do Tratamento , Terapia Familiar , EmoçõesRESUMO
Background: Epilepsy is a common chronic brain disorder globally affecting people of all ages, with the majority living in developing countries. The introduction of epilepsy self-management approaches to help people with epilepsy is urgently needed to influence epilepsy-related outcomes. This 2-site randomised controlled trial building on promising preliminary data is intended to explore this further. Methods: A total of 188 adult people with epilepsy (PWE) attending the neurology clinics at Mulago and Mbarara hospitals and consent to participate in the study. They will be randomised into intervention versus enhanced treatment control (eTAU) study groups. The intervention group will receive 12-week "intensive" educational sessions and a 12-week remotely accessed telephone follow-up stage. The controls will continue in their usual care supplemented by written materials on epilepsy in their preferred language and tailored to the reading level of most patients at the clinic. SMART-U consists of 2 main components: a 12-week "intensive" group format stage and a 12-week remotely accessed telephone follow-up stage. SMART-U will be assessed for acceptability, fidelity, and efficacy compared to eTAU. The primary study outcome is the mean change in cumulative past 24-week seizure frequency (24 weeks prior to the study baseline compared to the 24-week follow-up). Seizure frequency will be via self-report with corroboration by family/support system informants whenever possible. Participants will self-report their seizure frequency (numeric count) that they experienced between baseline and 13 weeks and again between 13 and 24 weeks and the mean change from baseline to 24 weeks in QOL. Discussion: The curriculum-guided Self-Management intervention for Reducing The epilepsy burden among Ugandans (SMART-U) program is anticipated to reduce the epilepsy burden seizure frequency and improve other health outcomes, including depression, functional status and health resource use. Trial Registration Number TRN: NCT06139198. Date of registration: 14th November 2023.
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Objective: Managing bipolar disorder (BD) is particularly challenging for adolescents and young adults (AYAs) ages 16 to 21. Few interventions exist that address self-management in AYAs with BD. Thus, this study aimed to modify the customized adherence enhancement behavioral intervention for AYAs through an iterative, patient-centered process. Method: The Obesity-Related Behavioral Intervention Trials (ORBIT) model was used for intervention development. In phase 1a, adherence barriers and facilitators were identified to refine intervention content. Phase 1b occurred following curriculum modification to ensure that the modified intervention was relevant and usable by the target population. Data were collected via focus groups and interviews with AYAs with BD, parents, and providers. Transcripts were analyzed using directed content analysis. Results: Phase 1a included focus groups/interviews with AYAs (n = 10), parents (n = 4), and providers (n = 9) who described the difficulties and successes in managing BD symptoms, improving adherence, and transitioning care from caregivers. Phase 1b included an advisory board composed of 8 phase 1a participants who provided feedback on modified session activities, module delivery, and curriculum. Phase 1b involved usability testing with new participants (n = 8), revealing the need for modifiable language based on developmental level, more engaging visual images, and confirmation that topics were salient to AYAs with BD. Conclusion: Though sample sizes were small and not representative of the population of AYAs with BD, the ORBIT methodology informed the adaptation of the customized adherence enhancement intervention to improve adherence in AYAs with BD. Important next steps are to conduct a pilot randomized clinical trial of customized adherence enhancement for AYAs.
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PURPOSE: Epilepsy-specific health-related quality of life (HRQOL) is an important outcome in youth with epilepsy (YWE). The PedsQL™ Epilepsy Module is the only caregiver-proxy and youth self-report epilepsy-specific HRQOL measure that can be used with youth 2-25 years. Multiple factors affect HRQOL, including epilepsy-specific characteristics, comorbid mental and behavioral health concerns, as well as sociodemographic factors. However, we have not yet examined the cumulative impact of these factors on epilepsy-specific HRQOL in YWE using the PedsQL™ Epilepsy module. METHOD: Youth with epilepsy (n = 281) and their caregivers completed questionnaires focused on sociodemographic factors (e.g., youth biological sex and age), mood/anxiety and behavior symptoms (i.e., Behavioral Assessment Scale for Children - Second Edition; BASC-2, Parent Rating Scale), epilepsy characteristics [e.g., seizure frequency, number of anti-seizure medications (ASMs), ASM side effects, and years since diagnosis], and the PedsQL™ Epilepsy module (subscales: Impact, Cognitive Functioning, Executive Functioning, Sleep, and Mood/Behavior). RESULTS: Hierarchical linear regressions were conducted to examine caregiver-proxy and youth self-reported factors that affect epilepsy-specific HRQOL. Results indicate the strongest key shared predictors of HRQOL in YWE, for both youth and caregiver informants, were mental and behavioral health symptoms. For instance, caregiver-proxy report of YWE HRQOL indicated BASC-2 Externalizing (p < 0.05), Behavioral Symptoms (p < 0.01), and Adaptive Skills (p < 0.001) explained 58 % of the variance in youth Cognitive Functioning HRQOL, while youth self-report of HRQOL indicated that BASC-2 Externalizing (p < 0.01), Behavioral Symptoms (p < 0.05), and Adaptive Skills (p < 0.001) contributed only 36 % of the variance in Cognitive Functioning HRQOL above and beyond the variance explained by sociodemographic and epilepsy-specific characteristics. Similar results were noted for Executive Functioning HRQOL domain, wherein caregiver-proxy report of YWE HRQOL indicated BASC-2 Internalizing (p < 0.01), Behavioral Symptoms (p < 0.001) and Adaptive Skills (p < 0.001) explained 65 % of variance in Executive Functioning, whereas youth self-report of Executive Functioning HRQOL indicated that caregiver-proxy BASC-2 Internalizing (p < 0.001) and Behavioral Symptoms (p < 0.01) explained 34 % of the variance in Executive Functioning HRQOL, above and beyond the variance explained by sociodemographic and epilepsy-specific characteristics. Unique mental and behavioral health predictors of YWE HRQOL were also found for both caregiver-proxy and youth self-report. CONCLUSIONS: Given the integral role of mental and behavioral health symptoms in epilepsy-specific HRQOL, it is critical to address mental and behavioral health symptoms preventatively and proactively to provide YWE with the most optimal health plan, including good seizure control, minimal ASM side effects, and the best possible HRQOL.
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Epilepsia , Qualidade de Vida , Criança , Humanos , Adolescente , Qualidade de Vida/psicologia , Epilepsia/psicologia , Função Executiva , Cognição , Inquéritos e Questionários , ConvulsõesRESUMO
Cystic Fibrosis (CF) is a genetic and chronic disease affecting 32,100 people in the United States as of 2021, with a life expectancy of 56 years for people with CF (PwCF) born between 2018 and 2022. While there is extensive literature about cystic fibrosis, there are few studies examining the complexity and challenges experienced by family caregivers for PwCF. The aim of this study was to examine the Caregiver Quality of Life Cystic Fibrosis (CQOLCF) scale using data (N = 217) from two separate studies that used the scale to determine if its items represent multiple factors relevant to CF family caregiver QoL. Factor analysis was conducted on the Seven distinct factors were found with analysis of the CQOLCF. Factors were Existential Dread (12%), Burden (11%), Strain (7%), Support (7%), Positivity (6%), Finance (5%) and Guilt (3%). Study findings indicated it is important for healthcare providers and researchers who use the CQOLCF to be knowledgeable and aware of the multiple factors associated with quality of life in this population in addition to an overall quality of life score.
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CONTEXT: Children with medical complexity (CMC) are at risk for adverse outcomes after discharge. Difficulties with comprehension of and adherence to discharge instructions contribute to these errors. Comprehensive reviews of patient-, caregiver-, provider-, and system-level characteristics and interventions associated with discharge instruction comprehension and adherence for CMC are lacking. OBJECTIVE: To systematically review the literature related to factors associated with comprehension of and adherence to discharge instructions for CMC. DATA SOURCES: PubMed/Medline, Embase, Cochrane Central Register of Controlled Trials, PsycInfo, Cumulative Index to Nursing and Allied Health Literature, Web of Science (database initiation until March 2023), and OAIster (gray literature) were searched. STUDY SELECTION: Original studies examining caregiver comprehension of and adherence to discharge instructions for CMC (Patient Medical Complexity Algorithm) were evaluated. DATA EXTRACTION: Two authors independently screened titles/abstracts and reviewed full-text articles. Two authors extracted data related to study characteristics, methodology, subjects, and results. RESULTS: Fifty-one studies were included. More than half were qualitative or mixed methods studies. Few interventional studies examined objective outcomes. More than half of studies examined instructions for equipment (eg, tracheostomies). Common issues related to access, care coordination, and stress/anxiety. Facilitators included accounting for family context and using health literacy-informed strategies. LIMITATIONS: No randomized trials met inclusion criteria. Several groups (eg, oncologic diagnoses, NICU patients) were not examined in this review. CONCLUSIONS: Multiple factors affect comprehension of and adherence to discharge instructions for CMC. Several areas (eg, appointments, feeding tubes) were understudied. Future work should focus on design of interventions to optimize transitions.
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Letramento em Saúde , Alta do Paciente , Humanos , Criança , Compreensão , CogniçãoRESUMO
OBJECTIVE: Assessing barriers to adherence provides helpful information to clinicians. The objective of this study was to describe the clinical utility of the Barriers Assessment Tool (BAT) using clinical data for a large, midwestern U.S. pediatric kidney transplant program. METHODS: Focus group and clinical data were obtained during post-transplant medical visits. Qualitative and quantitative assessment methods were utilized to describe patient and caregiver feedback on the BAT, clinical utility, concordance between reporters, and the effect of interventions on subsequent assessment and electronically measured adherence. RESULTS: Patients were willing to discuss adherence issues with their care team. There was substantial agreement between patients and caregivers at two timepoints. If a barrier was not addressed, 89.6% (43/48) of patients and 85.9% (67/78) of caregivers reported the same BAT scores from the first to second assessment. When barriers were addressed with a clinic-based intervention, 82% of caregivers reported no adherence barriers. No significant change was found for patient-reported barriers. CONCLUSIONS: Standardized assessment of barriers to medication adherence provides actionable information to clinicians. Standardized assessment of adherence barriers may give clinicians opportunities to help patients and caregivers overcome these barriers which can decrease risk of rejection.
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Objective: While medication non-adherence is common in bipolar disorder (BD), few studies have specifically assessed non-adherent BD adolescents and young adults (AYAs). This analysis, using screening and baseline data from an ongoing randomized controlled trial, examined the relationship between BD symptoms and adherence in poorly adherent AYAs. Methods: AYAs ages 13-21 had sub-optimal adherence defined as missing ⩾ 20% of prescribed BD medication. Mean sample (N = 36) age was 19.1 years (SD = 2.0), 66.7 % (N = 24) female, 25.0 % (n = 9) non-white. Adherence was measured via: 1) self-reported Tablets Routine Questionnaire (TRQ) and 2) electronic monitoring (SimpleMed pillbox). Symptoms were measured with the Hamilton Depression Rating Scale (HAM-D), the Young Mania Rating Scale (YMRS), and the Clinical Global Impression Scale (CGI). Results: Mean percentage of missed BD medications using TRQ was 34.9 (SD = 28.9) at screening and 30.6 (SD = 33.0) at baseline. Mean percentage of missed medication using SimpleMed at baseline was 42.1 (SD = 37.0). The correlation between TRQ and SimpleMed was r = 0.36 (p = 0. 13). Neither CGI nor age were correlated with adherence. Neither TRQ nor SimpleMed were significantly related to HAM-D. YMRS was positively associated with worse adherence for TRQ (r = 0.36, p = 0.03), but not significantly associated with SimpleMed. Adherence did not differ by other demographic attributes. Conclusion: Adherence levels varied widely in AYA with BD. Adherence monitoring increased adherence by approximately 4.5%, and use of electronic pill monitoring identified a greater proportion of missed medication vs. self-report. BD symptoms may not consistently identify AYA with adherence challenges.
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Transtorno Bipolar , Adulto Jovem , Humanos , Adolescente , Feminino , Adulto , Transtorno Bipolar/tratamento farmacológico , Adesão à Medicação , AutorrelatoRESUMO
OBJECTIVE: A family-tailored education and problem-solving intervention, Supporting Treatment Adherence Regimens (STAR), was developed to address the adherence challenges common in youth with epilepsy and their families. Randomized clinical trial (RCT) results indicated a 21% adherence improvement in the STAR group compared with an education-only (EO) group 12-months post-intervention. The current study examined group differences (STAR vs. EO) in epilepsy-specific knowledge, barriers to medication adherence, problem-solving skills, caregiver emotional distress, and family functioning over time and whether these factors mediated group differences in adherence at 12-months post-intervention. METHODS: Two-hundred children (ages 2-12) with epilepsy and their caregivers were included as RCT participants. Children with new-onset epilepsy and adherence <95% were randomized to receive either the STAR (n = 27) or EO (n = 29) intervention. Caregivers completed questionnaires assessing outcomes of interest at baseline, midpoint of the intervention, post-intervention, and 3-, 6-, and 12-month follow-ups. Regression-based analyses of covariance and longitudinal mixed effect linear models were conducted. RESULTS: Results generally revealed no significant group differences across outcomes of interest at post-intervention or over time. However, one significant model did emerge for social problem-solving skills (b = -1.74, p = 0.04), such that these scores were initially higher in the STAR group compared to the EO group, then decreased slightly in the STAR group over time while remaining stable in the EO group. None of these factors mediated group differences in adherence at 12-months post-intervention. CONCLUSION: Future research should examine other potential mechanisms of treatment change after adherence interventions, such as STAR. Nonsignificant findings can inform the development of future study designs and intervention efforts.
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Epilepsia , Adolescente , Humanos , Criança , Epilepsia/psicologia , Grupos de Autoajuda , Inquéritos e Questionários , Protocolos Clínicos , Adesão à Medicação/psicologiaRESUMO
Deficits in executive functions (EF) are a common comorbidity among adolescents with epilepsy. EF deficits were previously correlated with altered connectivity of the fronto-parietal and cingulo-opercular neural networks. The current study investigated white matter integrity in adolescents with epilepsy (n = 29) relative to healthy controls (n = 19). Participants completed questionnaires, neuropsychological testing, and brain magnetic resonance imaging (MRI) that included diffusion tensor imaging (DTI) sequences. On BRIEF parent-report questionnaires, adolescents with epilepsy demonstrated lower working memory and planning abilities than healthy controls. Among adolescents with epilepsy, DTI measurements revealed lower fractional anisotropy (FA) within the right superior longitudinal fasciculus, forceps minor, and the superior frontal segment of the corpus callosum, and higher FA in the left uncinate fasciculus, compared to healthy controls. Better working memory ability in the epilepsy group was associated with higher FA in the superior frontal segment of the corpus callosum. Only in healthy controls, working memory and planning were positively associated with FA values in the left UF, forceps minor and the superior frontal segment of the corpus callosum. The current study complements previous functional studies on the same cohort and suggests that EF impairments among adolescents with epilepsy may be related to the altered anatomical organization of white matter tracts. Combining structural and functional data could potentially enrich the neuropsychological assessment of executive functioning in adolescents with epilepsy.
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Mental health comorbidities are prevalent and problematic in patients with seizures but often suboptimally managed. To address common gaps in care, the Integrated Mental Health Care Pathways Task Force of the International League Against Epilepsy (ILAE) Psychiatry Commission was tasked with providing education and guidance on the integration of mental health management (e.g., screening, referral, treatment) into routine seizure care. This report aims to describe a variety of established services in this area, with a specific focus on psychological care models. Services were identified by members of the ILAE Psychiatry Commission and authors of psychological intervention trials in epilepsy. A total of eight services met inclusion criteria and agreed to be showcased. They include three pediatric and five adult services located across four distinct ILAE regions (Europe, North America, Africa, Asia Oceania). The report describes the core operations, known outcomes, and implementation factors (i.e., barriers and facilitators) of these services. The report concludes with a set of practical tips for building successful psychological care services within seizure settings, including the importance of having local champions, clearly defining the scope of the service, and establishing sustainable funding models. The breadth of exemplars demonstrates how models tailored to the local environment and resources can be implemented. This report is an initial step to disseminate information regarding integrated mental health care within seizure care settings. Future work is needed to systematically examine both psychological and pharmacological care models and to further establish the evidence base in this area, especially around clinical impact, and cost-effectiveness.
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Epilepsia , Psiquiatria , Adulto , Humanos , Criança , Epilepsia/terapia , Epilepsia/psicologia , Convulsões/terapia , Comorbidade , América do NorteRESUMO
This article characterizes the design, recruitment, methodology, participant characteristics, and preliminary feasibility and acceptability of the Families Ending Eating Disorders (FEED) open pilot study. FEED augments family-based treatment (FBT) for adolescents with anorexia nervosa (AN) and atypical anorexia nervosa (AAN) with an emotion coaching (EC) group for parents (i.e., FBT + EC). We targeted families high in critical comments and low warmth (assessed by the Five-Minute Speech Sample), known predictors of poor response in FBT. Eligible participants included adolescents initiating outpatient FBT, diagnosed with AN/AAN, ages 12-17, with a parent high in critical comments/low in warmth. The first phase of the study was an open pilot which demonstrated feasibility and acceptability of FBT + EC. Thus, we proceeded with the small randomized controlled trial (RCT). Eligible families were randomized to either 10 weeks of FBT + EC parent group treatment or the 10- week parent support group (control condition). The primary outcomes were parent critical comments and parental warmth, while our exploratory outcome was adolescent weight restoration. Novel aspects of the trial design (e.g., specifically targeting typical treatment non-responders), as well as recruitment and retention challenges in the context of the COVID-19 pandemic are discussed.
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OBJECTIVE: Adolescents with epilepsy are at heightened risk for suboptimal anti-seizure medication (ASM) adherence; however, there is a paucity of adherence interventions for this age group. The current study aimed to identify a comprehensive and novel set of predictors of objective, electronically-monitored ASM adherence in adolescents with epilepsy. METHODS: Participants included 104 adolescents (13-17 years old; M = 15.36 ± 1.40), diagnosed with epilepsy and their caregivers. Cross-sectional data were collected from adolescents, caregivers, healthcare providers, and medical chart reviews, including demographics (i.e., age, race/ethnicity, sex, insurance status), the COVID-19 pandemic (i.e., participation before versus during), seizure characteristics (i.e., presence and severity), ASM side effects (Pediatric Epilepsy Side Effects Questionnaire), adherence motivation (1-item 6-point Likert scale item), and adherence barriers (Pediatric Epilepsy Medication Self-Management Questionnaire). Electronically-monitored adherence data was collected via the AdhereTechTM pill bottle or the Vaica SimpleMedTM pillbox over 30 days. RESULTS: Adolescents demonstrated suboptimal adherence at 78 ± 31.6%, despite high ASM adherence motivation (M = 4.43 ± .94) and minimal adherence barriers (M = 35.64 ± 3.78). Hierarchical multiple regression, which included non-modifiable sociodemographic and medical variables (Block 1) and behaviorally modifiable psychosocial variables (Block 2) was significant, F(12,87) = 3.69, p < .001. Specifically, having private insurance (versus Medicaid or public insurance; t = -2.11, p = .038) and higher adherence motivation (t = 2.91, p = .005) predicted higher objective ASM adherence. CONCLUSION: Routine assessment of adherence predictors is vital for the promotion of adherence among adolescents with epilepsy. Adolescent adherence motivation may be an important element of multi-component interventions focused on improving ASM adherence in adolescents with epilepsy.
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COVID-19 , Epilepsia , Humanos , Criança , Adolescente , Anticonvulsivantes/uso terapêutico , Motivação , Estudos Transversais , Pandemias , Epilepsia/tratamento farmacológico , Epilepsia/epidemiologia , Epilepsia/psicologia , Adesão à Medicação/psicologiaRESUMO
Objective: Barriers to medication adherence are common in pediatric epilepsy and associated with nonadherence, suboptimal seizure outcomes, and quality of life. A manualized, family-tailored education and problem-solving adherence intervention to address adherence barriers was tested in a randomized controlled trial in young children (2-12 years) with epilepsy. Study aims were to identify the adherence barriers and solutions chosen by families during intervention. Methods: Participants with demonstrated non-adherence were randomized to either education attention control or treatment. In this exploratory, secondary analysis, treatment group data were examined, including adherence barriers and solutions discussed during face-to-face problem-solving sessions and telephone follow-ups. Treatment data were independently coded utilizing codebook thematic analysis. Results: Twenty-seven children were randomized to treatment (M=7.5±2.9; 59.1% female). Across sessions, coding revealed 10 adherence barriers: Overall Forgetting (38-57%), Routine Change Routine (14-24%), Competing Activities (5-19%), Opposition (0-9%), Transition of Responsibility (0-5%), Running Out of Medication (0-10%), Forgetting During Travel (0-10%), Medication Not a Priority (0-5%), Medication Taste (0-5%), and Pill Swallowing (0-5%). Eight solution types were chosen and implemented by families: Environmental Cuing (29-50%), Multi-Pronged solutions (0-24%), Positive Reinforcement (14-23%), Back-up Doses (0-14%), Refill Tracking (0-10%), Caregiver Modeling of Adherence Behavior (0-5%), Pill Swallowing Intervention (0-5%), and Other (0-5%). Conclusions: Results highlight key adherence barriers identified by families of children with epilepsy and solutions implemented to address them. These data provide guidance to healthcare teams on how to successfully address adherence barriers in clinical settings.Clinical trials #NCT01851057.
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OBJECTIVE: Despite evidence that consistent treatment is important for Attention-Deficit/Hyperactivity Disorder (ADHD) management, ADHD treatment initiation and adherence remains suboptimal in minoritized children. The goal of this study was to explore barriers and facilitators to ADHD treatment initiation/adherence for minoritized children to further inform development of our family navigation intervention. METHODS: Using a virtual platform, we completed 7 focus group sessions (total n.ß=.ß26) and 6 individual interviews with representatives from 4 stakeholder groups: experienced caregivers of children with ADHD, caregivers of children newly diagnosed with ADHD, family navigators, and clinicians who care for children with ADHD. All caregivers identified as Black and/or Latinx. Separate sessions were conducted for each stakeholder group and caregivers had the option to attend an English or Spanish session. Using a thematic analysis strategy, barriers and facilitators to ADHD treatment initiation and/or adherence were coded in focus group/interview data and themes were identified across groups. RESULTS: The primary barriers to ADHD treatment initiation and/or adherence identified for minoritized children were lack of support from school/healthcare/family members, cultural barriers, limited resources, limited access, and treatmentconcerns, with variability in endorsement across participants. Reported facilitators included caretakers having experience with ADHD, strong support, access to resources, andwitnessing their child...s functional improvement with treatment. CONCLUSIONS: Caregiver experience with and knowledge about ADHD, support, and access to resources facilitate ADHD treatment in minoritized children. The results from this study have the potential to improve ADHD treatment initiation/adherence and outcomes for minoritized children through the development of culturally tailored, multipronged interventions.
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Transtorno do Deficit de Atenção com Hiperatividade , Acessibilidade aos Serviços de Saúde , Criança , Humanos , Transtorno do Deficit de Atenção com Hiperatividade/tratamento farmacológico , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Grupos Focais , Hispânico ou Latino , Pais , Cuidadores , Negro ou Afro-AmericanoRESUMO
OBJECTIVE: Non-adherence to anti-seizure medications (ASMs) is common for adolescents with epilepsy, with potentially devastating consequences. Existing adherence interventions in epilepsy do not meet the unique challenges faced by adolescents. Leveraging social norms capitalizes on the increased importance of peer influence while simultaneously targeting the low motivation levels of many adolescents. The current study examined the feasibility, acceptability, and satisfaction of a social norms adherence intervention in adolescents with epilepsy. METHODS: A pilot RCT of a mHealth social norms intervention was conducted with adolescents with epilepsy who demonstrated non-adherence (≤95% adherence) during baseline. Adolescents were randomized to either (1) mHealth social norms (reminders, individualized and social norms adherence feedback) or (2) control (reminders and individualized adherence feedback). Primary outcomes included feasibility, acceptability, and satisfaction. Exploratory outcomes included electronically monitored adherence, seizure severity, and health-related quality of life (HRQOL). RESULTS: One hundred four adolescents were recruited (53% female; Mage = 15.4 ± 1.4 years; 81% White: Non-Hispanic; 5% Black, 10% Bi/Multiracial; 2% White: Hispanic; 1% Other: Hispanic; 1% Bi/Multiracial-Hispanic). Forty-five percent screen-failed due to high adherence, 16% withdrew, and 38% were randomized to treatment (n = 19) or control (n = 21). Recruitment (75%), retention (78%), and treatment satisfaction were moderately high. Engagement with the intervention was moderate, with 64% of participants engaging with intervention notifications. Exploratory analyses revealed that after controlling for COVID-19 impact, the social norms intervention group maintained higher adherence over time compared to the control group. Small to moderate effect sizes were noted for seizure severity and HRQOL between groups. CONCLUSION: This pilot intervention appeared feasible and acceptable. Increases in adherence in the treatment versus control group were modest, but a future larger more adequately powered study is needed to detect effects. Notably, it appeared the COVID pandemic influenced adherence behaviors during our trial.