RESUMEN
Sickle cell disease (SCD), which occurs primarily in individuals of African descent, has been identified as a preexisting health condition for COVID-19 with higher rates of hospitalization, intensive care unit admissions, and death. National data indicate Black individuals have higher rates of vaccine hesitancy and lower COVID-19 vaccination rates. Understanding the key predictors of intention to receive a COVID-19 vaccine is essential as intention is strongly associated with vaccination behavior. This multisite study examined attitudes, beliefs, intentions to receive COVID-19 vaccines, and educational preferences among adolescents, young adults, and caregivers of children living with SCD. Participants completed an online survey between July 2021 and March 2022. Multivariate logistic regression was used to examine the association between participant age and COVID-19 vaccine attitudes, beliefs, and vaccine intentions. Of the 200 participants, 65.1% of adolescents, 62.5% of young adults, and 48.4% of caregivers intended to receive a COVID-19 vaccine for themselves or their child. Perception that the vaccine was safe was statistically significant and associated with patient and caregiver intention to receive the COVID-19 vaccine for themselves or their child. Participant age was also statistically significant and associated with the intent to get a booster for patients. Study findings highlight key concerns and influencers identified by patients with SCD and their caregivers that are essential for framing COVID-19 vaccine education during clinical encounters. Study results can also inform the design of messaging campaigns for the broader pediatric SCD population and targeted interventions for SCD subpopulations (eg, adolescents, caregivers).
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Anemia de Células Falciformes , Vacunas contra la COVID-19 , COVID-19 , Conocimientos, Actitudes y Práctica en Salud , Intención , SARS-CoV-2 , Humanos , Anemia de Células Falciformes/psicología , Vacunas contra la COVID-19/administración & dosificación , Vacunas contra la COVID-19/uso terapéutico , Adolescente , Masculino , Femenino , COVID-19/prevención & control , Adulto , Adulto Joven , Niño , Encuestas y Cuestionarios , Vacunación/psicología , Vacilación a la Vacunación/psicología , Cuidadores/psicologíaRESUMEN
OBJECTIVE: Pediatric primary care is a promising setting in which to deliver preventive behavioral health services to young children and their families. Integrated behavioral health care models typically emphasize treatment rather than prevention. This pilot study examined the efficacy of an integrated behavioral health preventive (IBH-P) intervention delivered by psychologists and focused on supporting parenting in low-income mothers of infants as part of well-child visits in the first 6 months of life. METHODS: Using a mixed-methods approach that included a pilot randomized clinical trial and post-intervention qualitative interviews, 137 mothers were randomly assigned to receive IBH-P or usual care. Self-report measures of parenting, child behavior, and stress were obtained at pre- and/or post-intervention. Direct observation of mother-infant interactions was conducted at post-intervention. RESULTS: No differences between groups were found on maternal attunement, knowledge of child development, nurturing parenting, or infant behavior. A secondary analysis on a subsample with no prior exposure to IBH-P with older siblings found that mothers in IBH-P reported increased self-efficacy relative to controls. In the qualitative interviews, mothers stated that they valued IBH-P, learning about their baby, liked the integration in primary care, and felt respected and comfortable with their provider. CONCLUSIONS: Findings are discussed in terms of the next steps in refining IBH-P approaches to prevention in primary care.
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Madres , Responsabilidad Parental , Femenino , Humanos , Lactante , Desarrollo Infantil , Proyectos Piloto , Atención Primaria de SaludRESUMEN
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 Nerviosa , Tutoría , Humanos , Adolescente , Femenino , Masculino , Emoción Expresada , Anorexia Nerviosa/terapia , Anorexia Nerviosa/psicología , Resultado del Tratamiento , Terapia Familiar , EmocionesRESUMEN
BACKGROUND: Adherence promotion is a critical component of adolescent and young adult (AYA) cancer care, but predictors of nonadherence that could be targeted in intervention efforts remain largely unknown. The purpose of this multi-site longitudinal observational study was to examine the relationship between barriers and medication adherence among AYAs with cancer. PROCEDURE: Sixty-five AYAs (ages 15-24 years; mean age = 18.97 years, SD = 2.51; Mmean time since diagnosis = 1.42 years, SD = 1.95) with newly diagnosed or relapsed cancer completed self-report measures of barriers and adherence at quarterly study visits and used an electronic adherence monitoring device for 12 months. Longitudinal mixed effects models were used to examine our primary hypothesis that greater barriers are related to lower adherence over time. Descriptive statistics were used to explore our secondary aim of describing the frequency and patterns of barriers endorsed by AYAs with cancer. RESULTS: After controlling for covariates (time, medication type, race, ethnicity, diagnosis, time since diagnosis), a greater number of barriers was associated with lower electronically monitored (ß = -5.99, p = .005) and self-reported (ß = -1.92, p < .001) adherence. The specific barriers endorsed by AYAs differed across participants, and the majority of AYAs endorsed an entirely different pattern of barriers than any other AYA in the study. CONCLUSION: Barriers are associated with nonadherence and may be a promising target for intervention. Individual variability across barriers, however, suggests that tailoring may be necessary, and a promising next step is to explore personalized approaches to adherence promotion.
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Neoplasias , Humanos , Adolescente , Adulto Joven , Adulto , Neoplasias/tratamiento farmacológico , Autoinforme , Estudios Longitudinales , Enfermedad Crónica , Cumplimiento de la MedicaciónRESUMEN
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.
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COVID-19 , Epilepsia , Humanos , Femenino , Adolescente , Masculino , Calidad de Vida , Proyectos Piloto , Normas Sociales , Epilepsia/tratamiento farmacológicoRESUMEN
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 , Niño , Epilepsia/psicología , Grupos de Autoayuda , Encuestas y Cuestionarios , Protocolos Clínicos , Cumplimiento de la Medicación/psicologíaRESUMEN
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 , Niño , Adolescente , Anticonvulsivantes/uso terapéutico , Motivación , Estudios Transversales , Pandemias , Epilepsia/tratamiento farmacológico , Epilepsia/epidemiología , Epilepsia/psicología , Cumplimiento de la Medicación/psicologíaRESUMEN
OBJECTIVE: Rapid infant weight gain is associated with later obesity. Novel interventions to prevent rapid infant weight gain that are accessible to infants and families are needed, especially for those at the highest risk. Our aims were to examine: (a) feasibility and acceptability of a responsive parenting intervention delivered via Integrated Behavioral Health (IBH) in pediatric primary care and (b) preliminary effects on infant weight gain from birth to 6 (post-treatment) and 9 (follow-up) months. METHODS: A parallel design, proof-of-concept randomized control trial was conducted with 65 mother-infant dyads (32 randomized to intervention, 33 randomized an IBH attention control focused on promoting healthy mental health), in which the majority identify as Black (80%) and low income (91% receiving Medicaid). Participants and assessors were masked to treatment condition. Outcomes included feasibility (enrollment), acceptability (retention and adherence), and conditional weight gain (CWG), an indicator of rapid weight gain. RESULTS: The intervention was feasible (90% of eligible families enrolled) and acceptable (89% of families retained), with 81% receiving ≥3 of 4 treatment sessions. A medium effect was found on CWG (d = -0.54 post-treatment, d = -0.57 follow-up), with the infants in the treatment group showing significantly lower CWG (mean = -0.27, 95% CI, -0.63, 0.09) compared to the control group (mean = 0.29, 95% CI, -0.17, 0.76) at 9 months (p = .04). CONCLUSIONS: This study demonstrates the feasibility of implementing a responsive parenting obesity prevention intervention within primary care. Delivery in pediatric primary care is advantageous for implementation and reaching at-risk populations. The preliminary effects on CWG are promising and support testing in a larger trial.
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Obesidad Infantil , Femenino , Lactante , Humanos , Niño , Obesidad Infantil/prevención & control , Proyectos Piloto , Madres/psicología , Aumento de Peso , Atención Primaria de SaludRESUMEN
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.
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Epilepsia , Niño , Epilepsia/diagnóstico , Epilepsia/tratamiento farmacológico , Familia , Humanos , Cumplimiento de la Medicación , Padres , Clase SocialRESUMEN
OBJECTIVE: To evaluate how racial disparities in medication adherence barriers relate to key clinical outcomes (i.e., seizure control and adherence) in pediatric epilepsy and to identify the most critical barriers in determining health outcomes in Black youth and White youth. METHODS: This observational study included a sample of youth aged 2-17 years with epilepsy obtained by combining data from four different studies. A total of 226 caregivers and 43 adolescents reported on adherence barriers. An electronic monitor was used to measure adherence to the primary antiepileptic drug. Racial disparities in individual barriers were examined. The relative importance of different types of barriers in determining clinical outcomes was evaluated in both Black and White youth. RESULTS: Adherence barriers, including running out of medications, access to pharmacies, competing demands, and difficulty swallowing, disproportionally affected Black children with epilepsy compared to White children. System- and community-level barriers emerged as the most important in determining seizure outcomes among Black youth. Both system- and individual-level barriers, on the other hand, were important for adherence outcomes. CONCLUSIONS: System- and community-level barriers, as opposed to individual-level barriers, are more highly endorsed by Black families compared to White families. These barriers are also the most critical in driving seizure outcomes among Black youth. There is a critical need to shift from a primary focus on individual-level barriers to an approach that deliberately targets larger systemic barriers to reduce the existing adherence and health disparities that affect Black children with pediatric conditions.
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Epilepsia , Adolescente , Anticonvulsivantes/uso terapéutico , Cuidadores , Niño , Epilepsia/tratamiento farmacológico , Humanos , Cumplimiento de la Medicación , Convulsiones/tratamiento farmacológicoRESUMEN
OBJECTIVE: To assess whether integrated behavioral health (IBH) prevention encounters provided during well-child visits (WCVs) is associated with increased adherence to WCVs and timely immunizations in the first year. METHODS: Data were collected in an urban pediatric primary care clinic serving a low-income population and using the HealthySteps model. Subjects were 813 children who attended a newborn well-child visit between January 13, 2016 and August 8, 2017. Data from the electronic health record was extracted on attendance at six well-child visits in the first year of life, IBH prevention encounters by the HealthySteps specialist, completion of immunizations at 5 and 14 months, and demographics and social and clinical risk factors. RESULTS: After controlling for covariates, odds of attendance at 6, 9, and 12-month WCVs were significantly higher for those who had IBH prevention encounters at previous WCVs. Odds of immunization completion by 5 months was associated with number of IBH prevention encounters in the first 4 months (OR = 1.52, p = .001) but not immunization completion at 14 months (OR = 1.18, p = .059). CONCLUSIONS: IBH prevention encounters were associated with increased adherence to WCVs in the first year and vaccine completion at 5 months of age. These findings are consistent with IBH having a broad positive effect on child health and health care through strong relational connections with families and providing value in addressing emotional and behavioral concerns in the context of WCVs.
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Servicios de Salud del Niño , Inmunización , Niño , Salud Infantil , Humanos , Lactante , Recién Nacido , Examen Físico , PobrezaRESUMEN
OBJECTIVE: Regular psychosocial assessment is a best-practice guideline for young adult oncology care, but multipurpose, multidimensional, developmentally appropriate patient-reported outcome measurement strategies for young adults with cancer are lacking. This study reported on the development and preliminary validation of the Young Adult Psychosocial Assessment Strategy (YA-PAS), a tool designed to meet this clinical need. METHODS: The YA-PAS was developed based on the literature and clinician feedback. 20 young adults with cancer participated in cognitive interviews to provide feedback on complexity, readability, and applicability to inform measure refinement. Following refinements, 100 young adults with a history of cancer participated in an observational study including a preliminary evaluation of YA-PAS factor structure, internal consistency, test-retest reliability, construct and criterion validity, feasibility, and acceptability. RESULTS: Cognitive interviews and psychometric evaluation informed modifications and resulted in a measure with 9 domains (anxiety, depression, cognitive functioning, post-traumatic stress, family stressors, support, social isolation, self-efficacy for symptom management, and self-efficacy for medication management) and nonscoring items assessing substance use, life stressors, resources, educational/vocational status, and relationship status. 8 of 9 domains demonstrated acceptable internal consistency (Cronbach's α ≥ 0.70), substantial (r = 0.61-0.80) or almost perfect (r > 0.80) test-retest reliability, and evidence of domain and cut-point validity. 89% of participants were able to complete the YA-PAS within 20 min and 87% were satisfied with the measure. CONCLUSIONS: The YA-PAS demonstrated promising psychometric properties, feasibility, and acceptability. Clinical implications and research recommendations are discussed.
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Neoplasias , Humanos , Neoplasias/psicología , Neoplasias/terapia , Medición de Resultados Informados por el Paciente , Satisfacción Personal , Psicometría , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Adulto JovenRESUMEN
OBJECTIVE: This study was undertaken to examine the efficacy of a family-tailored education and problem-solving behavioral intervention, Supporting Treatment Adherence Regimens (STAR), in young children (2-12 years old) with new onset epilepsy compared to an attention control (i.e., education only [EO]) intervention. Participants randomized to the STAR intervention were hypothesized to demonstrate significantly improved adherence at postintervention and 3-, 6-, and 12-month follow-up visits compared to the EO intervention. Seizure and health-related quality of life (HRQOL) outcomes were also examined. METHODS: Two hundred children with new onset epilepsy and their caregivers were recruited during routine epilepsy clinic visits. Baseline questionnaires were completed, and electronic adherence monitors were provided. Participants with adherence less than 95% during the run-in period were randomized to either STAR or EO intervention. Active intervention was provided to both groups for 4 months. Questionnaires were completed at conclusion of the active intervention phase and three follow-up time points (3, 6, and 12 months). Group differences in adherence, seizure outcomes, and HRQOL were examined using regression-based analyses of covariance and longitudinal mixed effect linear or logistical models. RESULTS: Adherence at 12-month follow-up was significantly different between the STAR (mean = 82.34, SD = 21.29) and EO intervention groups (mean = 61.77, SD = 28.29), with the STAR group demonstrating 20.6% greater adherence (b = 19.11, p = .04, 95% confidence interval = 1.00-37.22, d = .83). No significant differences were found between groups in seizure and HRQOL outcomes. SIGNIFICANCE: A family-based behavioral adherence intervention demonstrated sustained adherence improvements 1 year following epilepsy diagnosis compared to an epilepsy-specific education intervention. STAR is an efficacious adherence intervention that can easily be implemented into routine epilepsy care.
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Anticonvulsivantes/uso terapéutico , Epilepsia/tratamiento farmacológico , Cumplimiento de la Medicación/estadística & datos numéricos , Cuidadores , Niño , Preescolar , Femenino , Estudios de Seguimiento , Humanos , Masculino , Educación del Paciente como Asunto , Calidad de Vida , Convulsiones/tratamiento farmacológico , Convulsiones/epidemiología , Encuestas y CuestionariosRESUMEN
OBJECTIVE: Spiritual and religious (S/R) coping is a relevant yet understudied domain of coping among caregivers of children undergoing hematopoietic stem cell transplantation (HCT). The aims of this manuscript are to: (1) conduct the first psychometric evaluation of the Brief RCOPE in this population; (2) examine levels of and changes in S/R coping over time; and (3) explore the relationship between S/R coping trajectories and psychological functioning post-HCT. METHODS: Caregivers (n = 170) of children (ages ≤12 years, n = 170) undergoing HCT completed the Brief RCOPE and the Brief Symptom Inventory (BSI) pre- and at multiple time points post-HCT discharge. Factor structure, internal consistency, and validity were examined. Growth mixture models were used to identify subgroups with similar S/R coping trajectories, with group memberships added to mixture models to explore relationships between group membership and caregiver psychological functioning trajectories. RESULTS: The Brief RCOPE exhibited the previously-supported two factor structure and each subscale demonstrated strong internal consistency (α = 0.85 and 0.92). Validity was supported by significant correlations with BSI scores. There were distinct subgroups of caregivers with different patterns of positive (n = 4 subgroups) and negative (n = 3 subgroups) S/R coping, with negative coping subgroup membership predicting changes in psychological functioning. CONCLUSIONS: The Brief RCOPE is a promising measure for assessing S/R coping among caregivers of children undergoing HCT and has the potential to identify caregivers at risk for poorer long-term psychological functioning.
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Cuidadores , Trasplante de Células Madre Hematopoyéticas , Adaptación Psicológica , Niño , Humanos , Alta del Paciente , PsicometríaRESUMEN
OBJECTIVES: We assessed the impact of COVID-19 on children with epilepsy and their families, focusing on epilepsy management, family routines, learning, and adherence to Centers for Disease Control and Prevention (CDC) pandemic guidelines (e.g., social distancing, mask wearing) within the first six months of the pandemic. Group differences in COVID-19 impact on families were also examined based on race and ethnicity, being medically and/or geographically underserved, and insurance status. METHODS: Participants (nâ¯=â¯131) included children with epilepsy and their families from two clinical trials. The Impact of COVID-19 on Pediatric Epilepsy Management (ICPEM) measure was developed and administered to caregivers online from April 2020 to September 2020 across four large pediatric hospitals. Administration of the ICPEM occurred both during routine study assessments and an additional acute time point to obtain information early in the pandemic (e.g., April and May 2020). Descriptive statistics and t-tests were used for analyses. RESULTS: Data indicate minor to moderate impact of COVID-19 on pediatric epilepsy management. Caregivers of children with epilepsy reported the most impact on education and social functioning. Adherence to CDC guidelines was reported to be high. Those having public insurance reported greater difficulties obtaining daily anti-seizure medications compared to those with private insurance. CONCLUSIONS: This study presents important initial data regarding the impact of COVID-19 epilepsy management and daily functioning in children with epilepsy and their families. While the acute impact of COVID-19 restrictions appear to be mild to moderate, it is unclear what the long-term impact of the pandemic will be on families of children with epilepsy.
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COVID-19 , Epilepsia , Adolescente , Cuidadores , Niño , Epilepsia/tratamiento farmacológico , Epilepsia/epidemiología , Humanos , Pandemias , SARS-CoV-2RESUMEN
INTRODUCTION: Adherence is suboptimal in adolescents with epilepsy. Social norms comparison (i.e., feedback about someone else's behavior related to one's own behavior) strategies may be beneficial in improving medication adherence. Using a novel model of behavioral intervention development, the aim of the current study was to create a social norms intervention for adolescents with epilepsy via focus groups and usability studies. METHODS: A focus group, individual interviews, short-term usability, and extended usage testing studies were conducted. Across all study phases, content and images of intervention components were displayed to participants as mock-ups in PowerPoint slide decks. After each phase, updated iterations were shown to participants to refine the intervention. Several questionnaires were completed by adolescents and caregivers to characterize the samples. RESULTS: Twelve adolescents participated in the focus group/individual interviews and usability studies. The final Behavioral Economic Adherence for Teens (BEAT) intervention consists of a text messaging system and a graphical user interface. General feedback indicated the need for simplicity and ease of use regarding obtaining the graphical messages (e.g., no extra login and passwords); engaging visual images; and weekly comparisons of a target patient's medication adherence to other adolescents' performance. The average system usability system (SUS) rating was 88.3â¯+â¯3.8. CONCLUSIONS: Our final intervention had high usability ratings and was perceived as engaging and easy to understand. An important next step is to test the BEAT intervention in a Phase 2 randomized trial.
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Epilepsia , Envío de Mensajes de Texto , Adolescente , Cuidadores , Epilepsia/tratamiento farmacológico , Grupos Focales , Humanos , Cumplimiento de la Medicación , Normas SocialesRESUMEN
OBJECTIVE: This article guides researchers through the process of specifying, troubleshooting, evaluating, and interpreting latent growth mixture models. METHODS: Latent growth mixture models are conducted with small example dataset of N = 117 pediatric patients using Mplus software. RESULTS: The example and data show how to select a solution, here a 3-class solution. We also present information on two methods for incorporating covariates into these models. CONCLUSIONS: Many studies in pediatric psychology seek to understand how an outcome changes over time. Mixed models or latent growth models estimate a single average trajectory estimate and an overall estimate of the individual variability, but this may mask other patterns of change shared by some participants. Unexplored variation in longitudinal data means that researchers can miss critical information about the trajectories of subgroups of individuals that could have important clinical implications about how one assess, treats, and manages subsets of individuals. Latent growth mixture modeling is a method for uncovering subgroups (or "classes") of individuals with shared trajectories that differ from the average trajectory.
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Psicología Infantil , Proyectos de Investigación , Niño , Humanos , Estudios LongitudinalesRESUMEN
OBJECTIVE: To examine changes in emotional and behavioral functioning and health-related quality of life (HRQOL) following a web-based executive functioning (EF) intervention open pilot trial (e.g., Epilepsy Journey) for adolescents with epilepsy. METHODS: Adolescents with an established diagnosis of epilepsy, EF deficits, and without developmental disorders participated in a single-arm trial of Epilepsy Journey. Epilepsy Journey is a gamified, online learning environment comprised of 10 learning modules targeting EF deficits (e.g., working memory, organization) and tailored to epilepsy with accompanying telehealth problem-solving sessions. Adolescents completed questionnaires assessing emotional and behavioral functioning and HRQOL at baseline, posttreatment, and 2 follow-ups . Longitudinal mixed models and logistic regression analyses were used for these secondary analyses. RESULTS: 39 adolescents were recruited for Epilepsy Journey (Mage=15.3 years; 67% female; 87% White: Non-Hispanic; 39% experienced seizures in the past 3 months). Preliminary data indicate significant improvements in caregiver-reported Externalizing symptoms, Behavioral Symptom Index scores and Adaptive Skills from baseline to 5-month follow-up. Significant improvements were observed for caregiver-reported Mood/Behavior and self-reported Impact, Cognitive Functioning, Executive Functioning, and Sleep subscales of the PedsQL Epilepsy Module. Clinically significant improvements (e.g., clinical/at-risk to normative levels) in behavioral and quality of life domains were also noted. CONCLUSION: Epilepsy Journey appears to contribute to changes in emotional and behavioral functioning and HRQOL in adolescents with epilepsy. Given the proof of concept trial format of this study, an important future direction is to conduct a randomized controlled trial with a larger, generalizable cohort of adolescents with epilepsy.
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Epilepsia , Calidad de Vida , Adolescente , Epilepsia/terapia , Función Ejecutiva , Femenino , Humanos , Masculino , Memoria a Corto Plazo , Solución de ProblemasRESUMEN
OBJECTIVE: Develop and evaluate the preliminary validity of a self-report measure of parents' treatment-related efficacy and control, Parental Efficacy and Control Questionnaire-Hematopoietic Stem Cell Transplant (PECQ-HCT), in a pediatric HCT sample. METHODS: Participants included 185 parents of children (≤12 years old) receiving HCT participating in a larger, longitudinal study. Parents completed the PECQ-HCT as well as measures of social problem-solving skills, collective family efficacy, family beliefs, and parental distress. RESULTS: Exploratory factor analysis results indicated that a 37-item four-factor model was the best fitting and most theoretically sound, χ2(df = 1,596) = 14,089.95, p < .01, comparative fit index = 0.92, Tucker-Lewis Index = 0.90, and root mean square error of approximation = 0.07. Preliminary subscale scores demonstrated adequate internal consistency as well as good content and criterion-related validity. CONCLUSIONS: If replicated using a confirmatory factor analysis in a separate sample, these findings suggest that the four-factor PECQ-HCT measure may be useful for measuring HCT-related parental efficacy and perceived control.
Asunto(s)
Trasplante de Células Madre Hematopoyéticas , Padres , Autoeficacia , Niño , Femenino , Humanos , Estudios Longitudinales , Psicometría , Reproducibilidad de los Resultados , Encuestas y CuestionariosRESUMEN
Dialectical behavior therapy (DBT) is commonly used in the treatment of eating disorders (ED), yet few studies have examined the utility of DBT skills groups as an adjunct to evidence-based therapy for ED. Thus, we sought to examine the preliminary efficacy of a DBT skills group as an adjunct to Family-Based Treatment (FBT) for adolescent restrictive ED. Our preliminary pilot study included 18 adolescent girls ages 13-18 (M= 15.3, SD = 1.64) with restrictive ED, including Anorexia Nervosa (AN; N = 10), Atypical Anorexia Nervosa (AAN, N = 5), and Other Specific Feeding or Eating Disorder (OSFED; N = 3). All participants were enrolled in a 6-month, weekly DBT skills group and were concurrently receiving family-based treatment (FBT). Participants who completed the intervention experienced large effect sizes for increases in adaptive skills (Cohen's d = .71) and decreases in general dysfunctional coping strategies (Cohen's d = .85); and small to medium effect sizes for decreases in binge eating (Cohen's d = .40) and increases in percent expected body weight (% EBW; Cohen's d = .32). Finally, small effect sizes were evidenced in decreases in Global EDE-Q scores (Cohen's d = .26), EDE-Q restraint (Cohen's d = .29) and CDI scores (Cohen's d = .28). Our study presents promising preliminary data suggesting that adolescents with restrictive EDs receiving FBT could benefit from an adjunctive DBT skills group. Feasibility of and considerations for tailoring a DBT skills group to an outpatient ED treatment program are discussed.