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1.
J Pediatr Gastroenterol Nutr ; 76(6): 743-748, 2023 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-36917834

RESUMO

There are no standard assessment approaches for Avoidant Restrictive Food Intake Disorder (ARFID). We describe our approach to multidisciplinary assessment after assessing more than 550 patients with ARFID. We collected online survey (ARFID-specific instruments, measures of anxiety, depression) measures. Electronic medical record data (mental health and gastrointestinal diagnoses, micronutrient and bone density assessments, and growth parameters) were extracted for the 239 patients with ARFID seen between 2018 and 2021 with both parent and patient responses to online surveys. We identified 5 subtypes/combinations of subtypes: low appetite; sensory sensitivity; fear + sensory sensitivity; fear + low appetite; fear + sensory sensitivity + low appetite. Those with appetite-only subtype had higher mean age (14.0 years, P < 0.01) and the lowest average body mass index z score (-1.74, P < 0.01) compared to other subtypes. Our experience adds to understanding of clinical presentations in patients with ARFID and may aid in assessment formulation.


Assuntos
Transtorno Alimentar Restritivo Evitativo , Transtornos da Alimentação e da Ingestão de Alimentos , Humanos , Adolescente , Atenção Terciária à Saúde , Índice de Massa Corporal , Ansiedade/diagnóstico , Redução de Peso , Estudos Retrospectivos
2.
J Clin Psychol Med Settings ; 30(2): 415-424, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-35986811

RESUMO

To examine the feasibility, acceptability, and preliminary efficacy of a technology-assisted stepped-care behavioral intervention to improve adherence in adolescents with asthma. Thirty adolescents (Mage = 14.66, 53% male) with moderate to severe-persistent asthma completed daily adherence monitoring and medication reminders via a mobile app (Step 1). Participants with < 68% adherence during Step 1 received a telehealth behavioral intervention (Step 2). Twenty-six of 30 participants (87%) completed Step 1. Step 2 was indicated for 18 participants and was completed by 17. Participants favorably rated their experience in the study. Improvements in adherence (40-58%, p = .048) and decreases in asthma composite severity scores (CASI 6.08-5.08, p = .023) were observed for the full sample. Technology-assisted stepped-care is feasible and acceptable. Participants demonstrated improved adherence and asthma composite severity scores once they received the appropriate step of the intervention. Future studies should include a control group, a longer time-frame and an intermediate intervention step.


Assuntos
Asma , Aplicativos Móveis , Humanos , Masculino , Adolescente , Feminino , Projetos Piloto , Adesão à Medicação , Asma/terapia , Terapia Comportamental
3.
Headache ; 60(6): 1103-1110, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32320052

RESUMO

OBJECTIVE: The objective of this study was to design, code, and pilot test the feasibility and preliminary efficacy of a self-management digital therapeutic tool for adolescents with migraine. BACKGROUND: Self-management of migraine in adolescents is complex and has important implications for health outcomes. A comprehensive and accessible approach to self-management is needed for youth with migraine, their parents, and clinicians. METHODS: An iterative co-design process was used to develop and optimize the Migraine Manager's digital therapeutic self-management tool. Subsequently, 40 adolescents, age 11-18 years, were enrolled in an 8-week single-arm open label trial (N = 36 analyzed). The primary outcome was headache days. RESULTS: Usage data for Migraine Manager were similar to other health app usage data and feedback from participants was uniformly positive, indicating acceptable feasibility. Preliminary efficacy was demonstrated by a reduction in headache days from 17.2 ± 8.5 at baseline to 7.9 ± 7.2 at 8 weeks (95% CI, -13.0 to -7.8; P < .001). There was also statistically significant improvement in patient physical functioning quality of life reported by both patients (baseline = 55.7 ± 20.4; 8 weeks = 69.7 ± 21.9, P = .005) and parents (baseline = 58.5 ± 22.8; 8 weeks = 74.3 ± 18.1, P = .002), and in parent-reported ingestion issues subscale of the adherence barriers scale from baseline to 8 weeks (baseline = 6.0 ± 2.6; 8 weeks = 5.2 ± 3.0, P = .020). CONCLUSIONS: A self-management digital therapeutic tool for adolescents with migraine can offer care to patients who might not otherwise receive such services. Migraine Manager demonstrated the feasibility and preliminary efficacy in this pilot trial, highlighting the potential beneficial impact of this tool. Larger controlled trials with long-term follow-up are needed to definitively determine the clinical efficacy of Migraine Manager.


Assuntos
Intervenção Baseada em Internet , Transtornos de Enxaqueca/terapia , Avaliação de Processos e Resultados em Cuidados de Saúde , Autogestão , Adolescente , Criança , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pais , Cooperação do Paciente , Projetos Piloto
4.
J Pediatr Psychol ; 45(9): 977-982, 2020 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-32929482

RESUMO

The COVID-19 pandemic has presented unique circumstances that have the potential to both positively and negatively affect pediatric adherence and self-management in youth with chronic medical conditions. The following paper discusses how these circumstances (e.g., stay-at-home orders, school closures, changes in pediatric healthcare delivery) impact disease management at the individual, family, community, and healthcare system levels. We also discuss how barriers to pediatric adherence and self-management exacerbated by the pandemic may disproportionately affect underserved and vulnerable populations, potentially resulting in greater health disparities. Given the potential for widespread challenges to pediatric disease management during the pandemic, ongoing monitoring and promotion of adherence and self-management is critical. Technology offers several opportunities for this via telemedicine, electronic monitoring, and mobile apps. Moreover, pediatric psychologists are uniquely equipped to develop and implement adherence-promotion efforts to support youth and their families in achieving and sustaining optimal disease management as the current public health situation continues to evolve. Research efforts addressing the short- and long-term impact of the pandemic on pediatric adherence and self-management are needed to identify both risk and resilience factors affecting disease management and subsequent health outcomes during this unprecedented time.


Assuntos
Betacoronavirus , Doença Crônica/terapia , Infecções por Coronavirus/prevenção & controle , Pandemias/prevenção & controle , Cooperação do Paciente/estatística & dados numéricos , Pneumonia Viral/prevenção & controle , Autogestão/estatística & dados numéricos , Telemedicina/métodos , Adolescente , COVID-19 , Criança , Doença Crônica/psicologia , Infecções por Coronavirus/psicologia , Humanos , Aplicativos Móveis , Pneumonia Viral/psicologia , SARS-CoV-2 , Autogestão/métodos
5.
J Pediatr Psychol ; 45(3): 340-357, 2020 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-31845997

RESUMO

OBJECTIVE: Treatment adherence is approximately 50% across pediatric conditions. Patient-reported outcomes (PROs) are the most common method of measuring adherence and self-management across research and clinical contexts. The aim of this systematic review is to evaluate adherence and self-management PROs, including measures of adherence behaviors, adherence barriers, disease management skills, and treatment responsibility. METHODS: Following PRISMA guidelines for systematic reviews, literature searches were performed. Measures meeting inclusion/exclusion criteria were evaluated using Hunsley and Mash's (2018) criteria for evidence-based assessment across several domains (e.g., internal consistency, interrater reliability, test-retest reliability, content validity, construct validity, validity generalization, treatment sensitivity, and clinical utility). Rating categories were adapted for the present study to include the original categories of adequate, good, and excellent, as well as an additional category of below adequate. RESULTS: After screening 172 articles, 50 PROs across a variety of pediatric conditions were reviewed and evaluated. Most measures demonstrated at least adequate content validity (n = 44), internal consistency (n = 34), and validity generalization (n = 45). Findings were mixed regarding interrater reliability, test-retest reliability, and treatment sensitivity. Less than half of the measures (n = 22) exhibited adequate, good, or excellent construct validity. CONCLUSIONS: Although use of adherence and self-management PROs is widespread across several pediatric conditions, few PROs achieved good or excellent ratings based on rigorous psychometric standards. Validation and replication studies with larger, more diverse samples are needed. Future research should consider the use of emerging technologies to enhance the feasibility of broad implementation.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Autogestão , Cooperação e Adesão ao Tratamento , Adolescente , Adulto , Criança , Pré-Escolar , Humanos , Psicometria/métodos , Reprodutibilidade dos Testes , Adulto Jovem
6.
J Pediatr Gastroenterol Nutr ; 69(5): 564-569, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31261247

RESUMO

OBJECTIVES: Among adolescents with inflammatory bowel disease (IBD), nonadherence rates are 50 to 88% across medications. Improving education in adults with IBD has been shown to improve coping and adherence to treatment in adults with IBD. Therapeutic patient education (TPE) has been used in patients with chronic diseases to train patients in skills to support treatment adaptation and condition management. This study tested the feasibility and preliminary efficacy of a novel TPE intervention in adolescents with IBD. METHODS: In this pilot, mixed-methods study, we evaluated the feasibility and preliminary efficacy of TPE with the IBD Pocket Guide on medication adherence, IBD knowledge, and transition readiness in adolescents ages 11 to 18 years. Medication adherence was monitored using a MedMinder Pill Dispensing system. Participants who were <90% adherent during a 4-week pre-intervention monitoring period were randomized to either a usual care group or an educational intervention (EI) group. Participants were followed for an additional 4 weeks after intervention. RESULTS: Trends were found in the EI group indicating improved medication adherence and IBD knowledge compared with the usual care group, though differences between groups did not reach statistical significance. Qualitative data showed that participants perceived that they had improved knowledge after the educational intervention. CONCLUSIONS: Therapeutic patient education may be beneficial for improving patient medication adherence and IBD knowledge. Future directions include testing the effects of the intervention with a larger sample.


Assuntos
Adaptação Psicológica , Doenças Inflamatórias Intestinais/psicologia , Adesão à Medicação , Educação de Pacientes como Assunto , Adolescente , Serviços de Saúde do Adolescente , Criança , Estudos de Viabilidade , Feminino , Humanos , Masculino , Ohio , Projetos Piloto , Inquéritos e Questionários
7.
J Asthma ; 56(9): 964-972, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-30207802

RESUMO

Objective: To examine the health technology uses and preferences of adolescents with asthma using a qualitative descriptive individual interview approach. Methods: Twenty adolescents were recruited from regularly scheduled asthma clinic appointments from February to July 2016. Patients were interviewed about their technology use and ways in which health technology could improve their asthma management using an open-ended semi-structured interview format. Interviews were audio recorded, transcribed, and coded into themes. Results: Social media (e.g. Snapchat, Instagram) and general communication (e.g. messaging) were the most common uses of technology while medical reminders (e.g. appointment, refill, medication) were the most common use of health technology. Adolescents identified ways in which health technology could improve their asthma management including (1) tracking symptoms and medication, (2) medical reminders, and (3) asthma and self-management knowledge specifically related to medications and individual action plans. Other themes that emerged included a desire to customize health technology to fit with individual schedules and medical routines and use of health technology data with medical providers. Conclusions: Adolescents and parents experience a number of challenges related to managing asthma, and health technology interventions should focus on ways to improve adherence and self-management. Future research considerations and potential interventions including ways to integrate adolescent preferences with evidence-based interventions are discussed.


Assuntos
Comportamento do Adolescente , Asma/terapia , Tecnologia Biomédica/estatística & dados numéricos , Preferência do Paciente , Autogestão/métodos , Adolescente , Asma/psicologia , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Cooperação do Paciente/psicologia , Pesquisa Qualitativa , Autogestão/estatística & dados numéricos , Mídias Sociais/estatística & dados numéricos , Inquéritos e Questionários/estatística & dados numéricos , Envio de Mensagens de Texto/estatística & dados numéricos
8.
J Pediatr Psychol ; 44(3): 333-342, 2019 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-30358863

RESUMO

OBJECTIVE: The objective of this study was to systematically evaluate commercially available medication adherence apps for the inclusion of behavior change techniques (BCTs) and to conduct a usability analysis on a subset of apps with adolescents and young adults living with a chronic illness. METHODS: Medication adherence apps were identified via a search of iTunes app store in August 2016. Seventy-five apps meeting initial inclusion criteria were independently coded by two researchers for the presence/absence of 26 BCTs. Twenty adolescents and young adults (ages: 13-20 years) with inflammatory bowel disease conducted usability testing on a subset of apps (n = 4). RESULTS: Across 75 apps coded for presence/absence of 26 BCTs, only 7 unique BCTs were identified. The number of BCTs per app ranged from 2 to 6, with an average of 3.3 BCTs. In usability testing, quality ratings varied across apps. Medisafe received the highest average scores on engagement, functionality, aesthetics, and information subscales. Medisafe and MyTherapy ranked first and second, respectively, on overall quality and perceived impact ratings. CONCLUSION: Content evaluation revealed only a limited number of BCTs that have been translated to medication adherence apps. Among apps with comparable content, clear user preferences emerged based on perceived quality and usability. Greater collaboration is needed between psychologists and health technologists to incorporate more evidence-based BCTs in apps. Findings also indicate a need for app developers to consider and incorporate the preferences of younger end users to improve app quality and engagement for pediatric populations.


Assuntos
Comportamentos Relacionados com a Saúde , Adesão à Medicação , Aplicativos Móveis/normas , Preferência do Paciente , Pediatria/métodos , Adolescente , Adulto , Feminino , Humanos , Doenças Inflamatórias Intestinais/tratamento farmacológico , Masculino , Adulto Jovem
9.
J Pediatr Psychol ; 43(4): 392-401, 2018 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-29096013

RESUMO

Objective: To summarize gluten-free diet (GFD) nonadherence risk factors, nonadherence rates, and current intervention research within an integrative framework and to develop a research agenda for the development and implementation of evidence-based GFD adherence interventions. Methods: Topical review of literature published since 2008 investigating GFD adherence in pediatric samples. Results: Reviews of pediatric studies indicate GFD nonadherence rates ranging from 19 to 56%. There are few evidence-based, published pediatric GFD adherence interventions. Novel assessments of GFD adherence are promising but require further study. Nonmodifiable and modifiable factors within individual, family, community, and health systems domains must be considered when developing future interventions. Clinical implications are discussed. Conclusions: Avenues for future research include development and refinement of adherence assessment tools and development of evidence-based GFD adherence interventions. Novel technologies (e.g., GFD mobile applications) require empirical study but present exciting opportunities for adherence intervention.


Assuntos
Dieta Livre de Glúten , Prática Clínica Baseada em Evidências , Cooperação do Paciente , Educação de Pacientes como Assunto , Adolescente , Criança , Humanos
10.
J Pediatr Psychol ; 43(1): 31-39, 2018 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-28444215

RESUMO

Objective: This study aimed to evaluate agreement between children and parents on a measure of behavioral and pharmacological adherence in children with sickle cell disease (SCD), and the associations among family factors (i.e., problem-solving skills, routines, communication) and adherence behaviors. Methods: In all, 85 children (aged 8-18 years) with SCD and their parents completed questionnaires assessing individual and family factors. Results: Overall parent-child agreement on an adherence measure was poor, particularly for boys and older children. Greater use of child routines was associated with better overall child-reported adherence. Open family communication was associated with higher overall parent-reported adherence. Conclusions: While further research is needed before definitive conclusions can be drawn, results suggest the need to assess child adherence behaviors via both child and parent reports. Findings also suggest that more daily family routines and open family communication may be protective factors for better disease management.


Assuntos
Anemia Falciforme/psicologia , Anemia Falciforme/terapia , Comportamento Infantil , Comportamentos Relacionados com a Saúde , Relações Pais-Filho , Cooperação do Paciente/psicologia , Adolescente , Adulto , Criança , Terapia Combinada , Estudos Transversais , Feminino , Estilo de Vida Saudável , Humanos , Masculino , Pessoa de Meia-Idade , Resolução de Problemas , Autorrelato
11.
J Clin Child Adolesc Psychol ; 47(3): 374-381, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-27646109

RESUMO

The goal of this study was to examine the moderating role of youth sleep disturbance on the relationship between youth internalizing and externalizing symptoms and parent psychological distress. Participants were 225 youth (ages 8-17) and parent dyads attending a primary care clinic appointment. Participants completed questionnaires that assessed parent psychological distress, youth internalizing symptoms, youth externalizing symptoms, and youth sleep disturbance. Moderation analyses were conducted to examine whether youth sleep disturbance moderated the relationship between youth internalizing and externalizing symptoms and parent psychological distress. The interaction between youth internalizing symptoms and youth sleep disturbance was significantly related to parent psychological distress, such that having increased sleep disturbance amplified the positive relationship between internalizing symptoms and parent psychological distress. The moderation model explained 52% of the variance in parent psychological distress. The interaction between youth externalizing symptoms and youth sleep disturbance was also significantly related to parent psychological distress, such that increased sleep disturbance amplified the positive relationship between externalizing symptoms and parent psychological distress. This model accounted for 53% of the variance in parent psychological distress. Greater youth sleep disturbance strengthens the positive relationship between youth internalizing/externalizing symptoms and parent psychological distress. Accordingly, reducing youth sleep disturbance may serve as an appropriate intervention target in families experiencing increased parent psychological distress.


Assuntos
Transtornos de Adaptação/diagnóstico , Relações Pais-Filho , Pais/psicologia , Transtornos do Sono-Vigília/psicologia , Estresse Psicológico/psicologia , Adolescente , Criança , Feminino , Humanos , Masculino , Inquéritos e Questionários
12.
J Pediatr Psychol ; 39(8): 809-25, 2014 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-24824614

RESUMO

PURPOSE: To conduct a meta-analysis of randomized controlled trials examining the efficacy of comprehensive behavioral family lifestyle interventions (CBFLI) for pediatric obesity. METHOD: Common research databases were searched for articles through April 1, 2013. 20 different studies (42 effect sizes and 1,671 participants) met inclusion criteria. Risk of bias assessment and rating of quality of the evidence were conducted. RESULTS: The overall effect size for CBFLIs as compared with passive control groups over all time points was statistically significant (Hedge's g = 0.473, 95% confidence interval [.362, .584]) and suggestive of a small effect size. Duration of treatment, number of treatment sessions, the amount of time in treatment, child age, format of therapy (individual vs. group), form of contact, and study use of intent to treat analysis were all statistically significant moderators of effect size. CONCLUSION: CBFLIs demonstrated efficacy for improving weight outcomes in youths who are overweight or obese.


Assuntos
Terapia Comportamental/métodos , Terapia Familiar/métodos , Estilo de Vida , Obesidade Infantil/terapia , Adolescente , Adulto , Peso Corporal , Criança , Humanos , Obesidade Infantil/psicologia
13.
Matern Child Health J ; 18(6): 1480-7, 2014 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-24162552

RESUMO

Maternal encouragement to diet has been linked to child disordered eating, overweight and obesity, and negative psychosocial outcomes. A limited amount of research has examined variables that may contribute to maternal encouragement to diet. The current study examined the relationship between child BMI, parent BMI, maternal concern about child weight status, and maternal encouragement to diet. 80 youths, aged 8-17, and their mothers were administered questionnaires to assess maternal weight concern and child perception of maternal encouragement to diet. Data were analyzed using a bootstrapped moderated mediation model. Higher child BMI predicted increased maternal weight concern, which in turn was related to increased encouragement to diet. Mothers of overweight and obese youth were more likely to be concerned about their child's weight if mothers themselves were overweight or obese. Overweight or obese girls (but not boys) with an overweight or obese mother were more likely to be encouraged to diet. The model accounted for 48% of the variance in maternal encouragement to diet. Results indicate a potential mechanism by which encouragement to diet occurs and highlight the relevance of maternal weight and child gender in the prediction of encouragement to diet.


Assuntos
Dieta Redutora/psicologia , Mães/psicologia , Adolescente , Índice de Massa Corporal , Criança , Dieta Redutora/estatística & dados numéricos , Feminino , Humanos , Masculino , Relações Mãe-Filho/psicologia , Sobrepeso/psicologia , Obesidade Infantil/psicologia , Inquéritos e Questionários
14.
J Eat Disord ; 12(1): 42, 2024 Mar 25.
Artigo em Inglês | MEDLINE | ID: mdl-38528642

RESUMO

BACKGROUND: Avoidant restrictive food intake disorder (ARFID) is a relatively new feeding and eating disorder added to the DSM-5 in 2013 and ICD-10 in 2018. Few studies have examined hospital utilization for patients with ARFID specifically, and none to date have used large administrative cohorts. We examined inpatient admission volume over time and hospital utilization and 30-day readmissions for patients with ARFID at pediatric hospitals in the United States. METHODS: Using data from the Pediatric Health Information System (PHIS), we identified inpatient admissions for patients with ARFID (by principal International Classification of Diseases, 10th Revision, ICD-10 diagnosis code) discharged October 2017-June 2022. We examined the change over time in ARFID volume and associations between patient-level factors (e.g., sociodemographic characteristics, co-morbid conditions including anxiety and depressive disorders and malnutrition), hospital ARFID volume, and hospital utilization including length of stay (LOS), costs, use of enteral tube feeding or GI imaging during admission, and 30-day readmissions. Adjusted regression models were used to examine associations between sociodemographic and clinical factors on LOS, costs, and 30-day readmissions. RESULTS: Inpatient ARFID volume across n = 44 pediatric hospitals has increased over time (ß = 0.36 per month; 95% CI 0.26-0.46; p < 0.001). Among N = 1288 inpatient admissions for patients with ARFID, median LOS was 7 days (IQR = 8) with median costs of $16,583 (IQR = $18,115). LOS and costs were highest in hospitals with higher volumes of ARFID patients. Younger age, co-morbid conditions, enteral feeding, and GI imaging were also associated with LOS. 8.5% of patients were readmitted within 30 days. In adjusted models, there were differences in the likelihood of readmission by age, insurance, malnutrition diagnosis at index visit, and GI imaging procedures during index visit. CONCLUSIONS: Our results indicate that the volume of inpatient admissions for patients with ARFID has increased at pediatric hospitals in the U.S. since ARFID was added to ICD-10. Inpatient stays for ARFID are long and costly and associated with readmissions. It is important to identify effective and efficient treatment strategies for ARFID in the future.


Recent studies indicate that Avoidant Restrictive Food Intake Disorder (ARFID) is a complex feeding and eating disorder often diagnosed in younger children. To date, there are no large studies using administrative data to examine hospital utilization or costs among patients with ARFID. In a geographically diverse cohort of pediatric hospitals in the United States, we found inpatient admissions for ARFID have increased over time and that ARFID is associated with long, costly stays and readmissions which has important implications for identifying efficient treatment strategies. Future studies are needed to explore effective and efficient treatment strategies and prevent readmissions in this patient population.

15.
J Eat Disord ; 12(1): 66, 2024 May 23.
Artigo em Inglês | MEDLINE | ID: mdl-38783304

RESUMO

INTRODUCTION: There is limited evidence to guide management of patients with avoidant restrictive food intake disorder (ARFID) admitted for medical stabilization. We describe variations in inpatient care which led to the development of a multidisciplinary inpatient clinical pathway (ICP) to provide standardized management and examine differences after the ICP was implemented. METHODS: A retrospective review of patients with ARFID admitted to Adolescent Medicine, Gastroenterology, and General Pediatrics at a single academic center was conducted. We compare hospital utilization and use of consulting services during the pre-ICP (2015-2017) and post-ICP (2018-2020) periods. RESULTS: 110 patients were admitted with ARFID (n = 57 pre- vs. n = 53 post-ICP). Most presented with moderate/severe malnutrition (63% pre vs. 81% post; p = 0.11) and co-morbid anxiety and/or depression (74% pre vs. 92% post; p = 0.01). There was some variation in use of enteral tube feeding by service in both periods (p = 0.76 and p = 0.38, respectively), although overall use was consistent between periods (46% pre vs. 58% post; p = 0.18). Pre-ICP, use of the restrictive eating disorder protocol differed across services (p < 0.001), with only AM using it. Overall, utilization of the restrictive eating disorder protocol decreased from 16% pre-ICP to 2% post-ICP (p = 0.02). There was variation by service in psychiatry/psychology (range 82-100% by service; p = 0.09) and social work consultations (range 17-71% by service; p = 0.001) during the pre-ICP period, though variation was reduced in the post-ICP period (p = 0.99 and p = 0.05, respectively). Implementation of the ICP led to improvements in these consultative services, with all patients in the post-ICP period receiving psychiatry/psychology consultation (p = 0.05) and an increase in social work consults from 44 to 64% (p = 0.03). Nutrition consults were consistently utilized in both periods (98% pre vs. 100% post; p = 0.33). CONCLUSION: The ICP was developed to standardize inpatient medical stabilization for patients with ARFID. In this single center study, implementation of the ICP increased standardized care for inpatients with ARFID with variation in care reduced: there were improvements in the use of consulting services and a reduction in the use of the restrictive eating disorder protocol. The ICP demonstrates the potential to further standardize and improve care over time.


There is limited evidence to guide management of children and adolescents with Avoidant Restrictive Food Intake Disorder (ARFID) admitted for medical stabilization. The study describes the variation in inpatient care for ARFID, which led to the development of a multidisciplinary standardized inpatient clinical pathway (ICP). The ICP centers the experience of the patient and family with an emphasis on biopsychosocial support. Implementation of the ICP increased standardized care for inpatients with ARFID with variation in care reduced: There were improvements in the use of psychiatry/psychology and social work consulting services and a reduction in the use of the restrictive eating disorder protocol. Future research is needed to better understand the impact of the inpatient clinical pathway to improve care over time.

16.
Sleep Med ; 101: 58-65, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36335892

RESUMO

OBJECTIVE/BACKGROUND: Adherence to positive airway pressure (PAP) treatment among children and adolescents is often suboptimal. Little is understood about modifiable determinants of PAP adherence. We evaluated whether patient and caregiver-perceived treatment barriers (across behavioral, environmental, emotional, and physical domains), as well as insomnia severity, were associated with PAP adherence among youth with sleep disordered breathing (SDB). PATIENTS/METHODS: We conducted a retrospective review of 188 patients prescribed PAP, ages 2-19 years. At the clinical visit, PAP adherence was assessed via objective download/smartcard and patients and their caregivers completed validated standardized questionnaires on barriers to PAP adherence and sleep onset and maintenance difficulties. We tested predictors of PAP adherence using linear regression. RESULTS: On average, patients wore their PAP 2/3 of nights for 5.3 ± 3.4 h. Patients reported more barriers overall compared to caregivers, and specifically more behavioral and emotional barriers (e.g., over a third of patients reported they just want to forget about sleep apnea). After controlling for demographic/treatment characteristics, patient-reported barriers accounted for a significant proportion of the variance in percent nights used (51%) and average nightly use (42%). Greater difficulties with sleep maintenance predicted poorer PAP adherence (percent nights and nightly duration). CONCLUSIONS: Study findings suggest that assessment of both patient and caregiver-perceived barriers to PAP adherence, as well as evaluating for sleep maintenance concerns, may provide important treatment targets for promoting PAP adherence among youth. Results also support the potential benefit of a multi-disciplinary team-based approach to managing SDB and promoting PAP adherence.


Assuntos
Síndromes da Apneia do Sono , Distúrbios do Início e da Manutenção do Sono , Adolescente , Humanos , Criança , Pré-Escolar , Adulto Jovem , Adulto , Cuidadores , Distúrbios do Início e da Manutenção do Sono/complicações , Pressão Positiva Contínua nas Vias Aéreas/métodos , Síndromes da Apneia do Sono/complicações , Pacientes , Cooperação do Paciente
17.
Sleep Med ; 74: 1-8, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32828897

RESUMO

OBJECTIVE: To evaluate and refine a newly proposed factor structure for the Adherence Barriers to Continuous Positive Airway Pressure Questionnaire (ABCQ) and to present psychometric data from a large, geographically diverse sample of children and young adults with sleep disordered breathing (SDB) treated with positive airway pressure (PAP). METHODS: A sample of 181 patients prescribed PAP for treatment of SDB, ages 8-21 years, and caregivers (n = 234) of patients ages 2-21 years, completed the ABCQ during routine sleep medicine clinic visits. Adherence data from participants' PAP machines were obtained via electronic download, providing objective data on PAP adherence immediately preceding the clinic visit during which the ABCQ was completed. RESULTS: A three-factor structure (1. Behavior, Beliefs, Environment, 2. Emotional Barriers, & 3. Physical Barriers) exhibited good model fit in confirmatory factor analysis. Results indicate that the ABCQ has strong psychometric properties, including good internal consistency among subscales and strong convergent validity with objectively measured PAP adherence. Analysis of the Receiver Operator Characteristic Curve (ROC) yielded an ABCQ total cut-off score of 46.5 for patient report and 53.5 for caregiver report. Scores above the cutpoint predicted nonadherence to PAP, defined as failure to use PAP for ≥4 h on 70% of nights. CONCLUSIONS: The three-factor ABCQ appears to be a useful patient- and caregiver-report instrument to measure barriers to PAP treatment in children and young adults with sleep disordered breathing.


Assuntos
Pressão Positiva Contínua nas Vias Aéreas , Síndromes da Apneia do Sono , Adolescente , Adulto , Criança , Pré-Escolar , Análise Fatorial , Humanos , Cooperação do Paciente , Síndromes da Apneia do Sono/diagnóstico , Síndromes da Apneia do Sono/terapia , Inquéritos e Questionários , Adulto Jovem
18.
Eat Behav ; 39: 101437, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-33130365

RESUMO

BACKGROUND: Youth may engage in healthy weight control behaviors (HWCBs) and unhealthy weight control behaviors (UWCBs) to lose or maintain weight. Youth observation of WCBs by supporter groups (parents/siblings/peers) and youth beliefs about the safety of WCBs may impact which WCBs youth use. The primary aim of this study was to examine the mediating role of youth safety perceptions of WCBs on the relationships between supporter group engagement in WCBs and youth engagement in WCBs. Youth BMI-z-score was analyzed as a moderator. METHODS: Participants were 219 youth (52.1% females), ages 10-17, attending an outpatient medical appointment. Participants completed questionnaires about their WCB use, whether they perceived WCBs as safe/unsafe, and whether they perceived parents, siblings and peers to use WCBs. A standardized formula including youth age, sex, height, and weight was used to calculate BMI-z-score. RESULTS: A moderated mediation model examining parental and youth engagement in UWCBs revealed that for youth in the healthy to overweight/obese (OV/OB) range, greater safety perception of UWCBs mediated the relationship between higher parent engagement in UWCBs and higher youth engagement in UWCBs. Furthermore, youth safety perception of HWCBs mediated the relationship between perceived parent, sibling, and peer engagement in HWCBs and youth engagement in HWCBs. CONCLUSION: This study identifies perceived parent, sibling, and peer WCBs and youth safety perceptions as mechanisms affecting youth WCB engagement, particularly for youth in the OV/OB range. Intervention effectiveness may increase if parent, sibling, and peer WCBs are targeted and education about safe/unsafe ways to control weight is provided.


Assuntos
Comportamentos Relacionados com a Saúde , Sobrepeso , Adolescente , Peso Corporal , Criança , Feminino , Humanos , Masculino , Obesidade , Pais , Percepção , Inquéritos e Questionários
19.
Aliment Pharmacol Ther ; 50(8): 911-918, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31373712

RESUMO

BACKGROUND: Medication non-adherence in paediatric ulcerative colitis (UC) has been associated with negative health outcomes including flares in disease activity. However, no studies to date have examined longitudinal adherence to maintenance medication in a prospective controlled trial. AIMS: To determine whether objectively measured adherence to standardised mesalazine (mesalamine) therapy over time was related to remission at 52 weeks and the need for treatment escalation in newly diagnosed paediatric patients with UC METHODS: PROTECT (NCT01536535) was a prospective, inception cohort, multi-site study of paediatric patients aged 4-17 years with newly diagnosed UC followed for 52 weeks. Patients received standardised mesalazine, with pre-established criteria for escalation to thiopurines or anti-TNFα inhibitors. Patients used pill bottles with electronic caps to monitor mesalazine adherence. We tested whether longitudinal adherence to mesalazine predicted steroid-free remission at week 52 (i.e. quiescent disease on mesalazine alone with no corticosteroids ≥4 weeks prior) and need for treatment escalation (i.e. introduction of immunomodulators, calcineurin-inhibitors or anti-TNFα inhibitors). RESULTS: Among 268 patients, average mesalazine adherence trajectories did not predict week 52 steroid-free remission. Declining adherence over time strongly predicted treatment escalation (ß = -.037, P = .001). By month 6, adherence rate ≤85.7% was associated with treatment escalation. CONCLUSIONS: Non-adherence may have affected therapeutic efficacy of standardised mesalazine, thereby contributing to need for treatment escalation. Routine adherence monitoring for at least 6 months following treatment initiation and addressing adherence difficulties early in the disease course are recommended.


Assuntos
Anti-Inflamatórios não Esteroides/uso terapêutico , Colite Ulcerativa/diagnóstico , Colite Ulcerativa/tratamento farmacológico , Adesão à Medicação , Mesalamina/uso terapêutico , Adolescente , Corticosteroides/uso terapêutico , Inibidores de Calcineurina/farmacologia , Inibidores de Calcineurina/uso terapêutico , Criança , Pré-Escolar , Esquema de Medicação , Feminino , Previsões , Humanos , Estudos Longitudinais , Masculino , Estudos Prospectivos , Fator de Necrose Tumoral alfa/antagonistas & inibidores
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