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1.
Dysphagia ; 38(1): 220-226, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35486189

RESUMO

By understanding health conditions, impairments, and impact on quality of life for pediatric feeding disorders, assessment and treatment approaches can target multiple levels of health-related domains that improve child health and well-being. The purpose of this study was to characterize medical diagnoses and feeding impairments for children with feeding disorders; examine child quality of life and caregiver impact; and compare quality of life differences between children with feeding disorders and children with other conditions. A cross-sectional study was conducted in the Greater Boston Area, between October 2017 and June 2018. Fifty children with a feeding disorder diagnosis, ages 2-5 years, were enrolled. Demographic and clinical data were abstracted from the electronic health record to characterize medical diagnoses and impairments. Parents completed the Pediatric Quality of Life Generic Core Scales 4.0 (PedsQL) and the Feeding/Swallowing Impact Survey (FS-IS) to understand child quality of life and caregiver impact. We calculated descriptive statistics across the medical diagnosis and impairment groups, and for the surveys. Children presented with heterogeneous medical diagnoses and feeding impairments. We found a mean (SD) total score of 72.82(19.21) on the PedsQL and 2.33(0.89) on the FS-IS demonstrating that children with feeding disorders presented with poor quality of life and their caregivers were negatively impacted by their feeding difficulties. By understanding medical diagnoses, impairments, and quality of life, assessment and treatment methods can be tailored to children's specific needs, as well as address the overall wellbeing of children and their families.


Assuntos
Transtornos da Alimentação e da Ingestão de Alimentos , Qualidade de Vida , Criança , Humanos , Pré-Escolar , Estudos Transversais , Deglutição , Transtornos da Alimentação e da Ingestão de Alimentos/diagnóstico , Transtornos da Alimentação e da Ingestão de Alimentos/terapia , Inquéritos e Questionários , Cuidadores
2.
Cancer ; 127(17): 3214-3222, 2021 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-34061973

RESUMO

BACKGROUND: Medical financial burden includes material, behavioral, and psychological hardship and has been underinvestigated among adult survivors of childhood cancer. METHODS: A survey from 698 survivors and 210 siblings from the Childhood Cancer Survivor Study was analyzed. The intensity of financial hardship was estimated across 3 domains: 1) material, including conditions that arise from medical expenses; 2) behavioral, including coping behaviors to manage medical expenses; and 3) psychological hardship resulting from worries about medical expenses and insurance, as measured by the number of instances of each type of financial hardship (0, 1-2, and ≥3 instances). Multivariable logistic regressions were conducted to examine the clinical and sociodemographic predictors of experiencing financial hardship (0-2 vs ≥3 instances). RESULTS: The intensity of financial hardship did not significantly differ between survivors and siblings. Survivors reported more instances of material hardship than siblings (1-2 instances: 27.2% of survivors vs 22.6% of siblings; ≥3 instances: 15.9% of survivors vs 11.4% siblings; overall P = .03). In multivariable regressions, insurance was protective against all domains of financial hardship (behavioral odds ratio [OR], 0.12; 95% confidence interval [CI], 0.06-0.22; material OR, 0.37; 95% CI, 0.19-0.71; psychological OR, 0.10; 95% CI, 0.05-0.21). Survivors who were older at diagnosis, female, and with chronic health conditions generally had higher levels of hardship. Brain radiation and alkylating agents were associated with higher levels of hardship. CONCLUSIONS: Material, behavioral, and psychological financial burden among survivors of childhood cancer is common.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adulto , Sobreviventes de Câncer/psicologia , Criança , Efeitos Psicossociais da Doença , Feminino , Estresse Financeiro , Gastos em Saúde , Humanos , Neoplasias/psicologia , Sobreviventes
3.
J Pediatr ; 221: 240-245.e1, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32143927

RESUMO

A mixed methods approach was used to examine perspectives of 114 primary care providers regarding barriers and needs for support in caring for children with autism. The most common barriers related to lack of knowledge and resources for diagnosing and treating children with autism, and inadequate visit time and reimbursement.


Assuntos
Transtorno Autístico/epidemiologia , Necessidades e Demandas de Serviços de Saúde , Avaliação das Necessidades , Atenção Primária à Saúde , Adulto , Idoso , Agendamento de Consultas , Administração de Caso , Competência Clínica , Feminino , Recursos em Saúde , Acessibilidade aos Serviços de Saúde , Humanos , Reembolso de Seguro de Saúde , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Fatores de Tempo , Estados Unidos/epidemiologia
4.
BMC Pediatr ; 20(1): 168, 2020 04 17.
Artigo em Inglês | MEDLINE | ID: mdl-32303218

RESUMO

BACKGROUND: Many children and their families are affected by premature birth. Yet, little is known about their healthcare access and adverse family impact during early childhood. This study aimed to (1) examine differences in healthcare access and adverse family impact among young children by prematurity status and (2) determine associations of healthcare access with adverse family impact among young children born prematurely. METHODS: This was a secondary analysis of cross-sectional 2016 and 2017 National Survey of Children's Health data. The sample included 19,482 U.S. children ages 0-5 years including 242 very low birthweight (VLBW) and 2205 low birthweight and/or preterm (LBW/PTB) children. Prematurity status was defined by VLBW (i.e., < 1500 g at birth) and LBW/PTB (i.e., 1500-2499 g at birth and/or born at < 37 weeks with or without LBW). Healthcare access measures were adequate health insurance, access to medical home, and developmental screening receipt. Adverse family impact measures were ≥ $1000 in annual out-of-pocket medical costs, having a parent cut-back or stop work, parental aggravation, maternal health not excellent, and paternal health not excellent. The relative risk of each healthcare access and adverse family impact measure was computed by prematurity status. Propensity weighted models were fit to estimate the average treatment effect of each healthcare access measure on each adverse family impact measure among children born prematurely (i.e., VLBW or LBW/PTB). RESULTS: Bivariate analysis results showed that VLBW and/or LBW/PTB children generally fared worse than other children in terms of medical home, having a parent cut-back or stop working, parental aggravation, and paternal health. Multivariable analysis results only showed, however, that VLBW children had a significantly higher risk than other children of having a parent cut-back or stop work. Adequate health insurance and medical home were each associated with reduced adjusted relative risk of ≥$1000 in annual out-of-pocket costs, having a parent cut-back or stop work, and parental aggravation among children born prematurely. CONCLUSIONS: This study's findings demonstrate better healthcare access is associated with reduced adverse family impact among U.S. children ages 0-5 years born prematurely. Population health initiatives should target children born prematurely and their families.


Assuntos
Acessibilidade aos Serviços de Saúde , Doenças do Recém-Nascido , Doenças do Prematuro , Nascimento Prematuro , Pré-Escolar , Estudos Transversais , Atenção à Saúde , Família , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Gravidez
5.
Matern Child Health J ; 24(1): 39-53, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31650412

RESUMO

OBJECTIVES: One in five children have a learning and attentional disability (LAD). Parents of children with LAD are vulnerable to distress, but an evidence-based treatment has not been developed. METHODS: From June 2016 to November 2017, we conducted a mixed methods study to adapt and assess the virtual delivery of a mind-body group resiliency program, the Stress Management and Resiliency Training-Relaxation Response Resiliency Program (SMART-3RP), to meet the needs of parents of children with LAD; this is an 8-session weekly group intervention. In the first phase, we conducted 4 parent focus group interviews, 2 professional focus group interviews, and 5 professional individual interviews, and 1 pilot group to adapt the SMART-3RP to target the needs of parents of children with LAD. In the second phase, we conducted a pilot wait-list controlled study to assess the feasibility, acceptability, and preliminary efficacy of a videoconferencing delivery of the adapted program. Parents were randomized to an immediate intervention group (IG) or wait-list control group (WC). Surveys were administered at baseline (time 1), end of intervention for the IG or 3 months post-baseline for the WC (time 2), and 3 months post treatment for the IG or end of intervention for the WC (time 3). RESULTS: Qualitative findings illustrated high levels of parental stress, with primary stressors including navigating the educational system, interactions with other parents, familial concerns, and financial and professional sacrifices. We adapted the manual to target these stressors and modified session logistics and delivery. Fifty-three parents (mean age = 46.8; 90.6% female) participated nationally in the pilot trial. 62.5% of participants completed ≥ 6/8 sessions; 81.8% reported continued daily/weekly relaxation response exercise practice. T1-T2 comparisons found that IG versus WC participants showed significant improvements in distress [VAS], ∆M = - 1.95; d = .83 and resilience [CES], ∆M = 6.38; d = .83, as well as stress coping [MOCS-A] ∆M = 8.69; d = 1.39; depression and anxiety [PHQ-4], ∆M = - 1.79; d = .71; social support [MOS-SSS], ∆M = 5.47; d = .71; and empathy [IRI], ∆M = 3.17; d = .77; improvements were sustained at the 3 month post intervention follow-up. CONCLUSION: Pilot wait-list randomized trial findings showed promising feasibility, acceptability, and preliminary efficacy for the SMART-3RP intervention adapted for parents of children with LAD. This virtually-delivered resiliency intervention improved parents' distress, resiliency, and stress coping, which were sustained. CLINICAL TRIALS ID: NCT02772432.


Assuntos
Depressão/terapia , Pais/psicologia , Psicoterapia de Grupo/métodos , Qualidade de Vida/psicologia , Resiliência Psicológica , Estresse Psicológico/terapia , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Criança , Depressão/etiologia , Crianças com Deficiência/psicologia , Família , Estudos de Viabilidade , Feminino , Humanos , Deficiência Intelectual/diagnóstico , Masculino , Meditação , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Pais/educação , Aceitação pelo Paciente de Cuidados de Saúde , Avaliação de Programas e Projetos de Saúde , Estresse Psicológico/psicologia
6.
J Intensive Care Med ; 34(11-12): 973-977, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-28797189

RESUMO

OBJECTIVE: A child's pediatric intensive care unit (PICU) admission may have wide-ranging family implications. We assessed nonmedical out-of-pocket expenses (NMOOPEs) and disruptions in work and normal life for parents with a child admitted to the PICU for at least 2 days with acute, new onset, or exacerbation of a critical condition. DESIGN: We conducted a prospective, single-center study; administered a daily verbal response survey on NMOOPEs; stratified families by annual income (<$50 999, $51-99 000, >$100 000); and calculated daily expenditures (DEs), estimated daily budgets (DBs), and percentage of NMOOPEs (%DE/DB). We used a modified caregiver version of the Work Productivity and Activity Impairment Scale to assess the impact of PICU admission on work-related and normal life activities. SETTING: The PICU in an academic, tertiary medical center in the United States. PATIENTS: Patients admitted to PICU. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The study included 38 families, with median length of PICU stay of 3 days (range 3-13). The mean total NMOOPE was $127 ± $107 (range $5-$511). Financial impact of DB in the 3 annual income groups ranged from 0% to 136% (median 36%), 5% to 18% (median 10%), and 4% to 39% (median 16%), respectively. Total work absenteeism for cohort was 78 days. High levels of distraction were reported in working families, and normal daily activities were interrupted or suspended. CONCLUSIONS: PICU hospitalization results in a range of direct NMOOPEs of varying burden on families and additional work productivity impact. Further research to understand the array of financial implications on families and additional mitigation strategies are needed.


Assuntos
Estado Terminal/economia , Características da Família , Hospitalização/economia , Renda/estatística & dados numéricos , Unidades de Terapia Intensiva Pediátrica/economia , Criança , Pré-Escolar , Efeitos Psicossociais da Doença , Feminino , Humanos , Masculino , Projetos Piloto , Estudos Prospectivos , Pesquisa Qualitativa
7.
Cancer ; 124(16): 3390-3400, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29905942

RESUMO

BACKGROUND: To the authors' knowledge, health-related quality of life (HRQOL) outcomes are not well described in patients with medulloblastoma. The use of proton radiotherapy (RT) may translate into an improved HRQOL. In the current study, the authors report long-term HRQOL in patients with proton-treated pediatric medulloblastoma. METHODS: The current study was a prospective cohort HRQOL study of patients with medulloblastoma who were treated with proton RT and enrolled between August 5, 2002, and October 8, 2015. Both child report and parent-proxy report Pediatric Quality of Life Inventory (PedsQL) surveys were collected at baseline during RT and annually thereafter (score range on surveys of 0-100, with higher scores indicating better HRQOL). Patients were dichotomized by clinical/treatment variables and subgroups were compared. Mixed-model analysis was performed to determine the longitudinal trajectory of PedsQL scores. The Student t test was used to compare long-term HRQOL measures with published means from a healthy child population. RESULTS: Survey data were evaluable for 116 patients with a median follow-up of 5 years (range, 1-10.6 years); the median age at the time of diagnosis was 7.6 years (range, 2.1-18.1 years). At baseline, children reported a total core score (TCS) of 65.9, which increased by 1.8 points annually (P<.001); parents reported a TCS of 59.1, which increased by 2.0 points annually. Posterior fossa syndrome adversely affected baseline scores, but these scores significantly improved with time. At the time of last follow-up, children reported a TCS of 76.3, which was 3.3 points lower than that of healthy children (P = .09); parents reported a TCS of 69, which was 11.9 points lower than that of parents of healthy children (P<.001). Increased follow-up time from diagnosis correlated with improved HRQOL scores. CONCLUSIONS: HRQOL scores appear to increase over time after treatment in children treated with proton RT for medulloblastoma but remain lower compared with those of parent-proxy reports as well as published means from a healthy normative sample of children. Additional follow-up may translate into continued improvements in HRQOL. Cancer 2018. © 2018 American Cancer Society.


Assuntos
Meduloblastoma/epidemiologia , Meduloblastoma/radioterapia , Pediatria , Terapia com Prótons/efeitos adversos , Adolescente , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Masculino , Meduloblastoma/patologia , Pais , Qualidade de Vida , Inquéritos e Questionários , Adulto Jovem
8.
J Neurooncol ; 137(1): 119-126, 2018 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-29214403

RESUMO

Radiation therapy (RT) is integral in the treatment of pediatric brain tumors; however, photon RT (XRT) often results in intellectual decline, executive functioning (EF) deficits, academic underachievement/failure, and lower health-related quality of life (HRQoL). Proton RT (PRT) provides more targeted therapy, minimizing damage to the developing brain, yet few studies have examined its neuropsychological effects. This study investigated the role of EF in academic skills and HRQoL in a sample of children treated with PRT. A mediation model was proposed in which academic skills mediated relations between aspects of EF and school-based HRQoL (sHRQoL). Sixty-five children (x̅age = 12.4; 43.9% male) treated with PRT completed follow-up neuropsychological testing as part of routine care. Measures included assessment of intellectual functioning, EF, attention, and academic skills (reading, math, spelling). Parents reported on children's EF and attention problems. sHRQoL was assessed via child self-report. Children who underwent PRT demonstrated relatively intact intelligence, academics, attention, EF, and sHRQoL, but were at risk for reduced processing speed. Poorer working memory and processing speed were related to lower sHRQoL. Better EF and faster processing speed were associated with better academic skills, which were linked to higher sHRQoL. Better working memory was associated with better math performance, which was linked to higher sHRQoL; this relationship did not hold for reading or spelling. Results highlight the importance of EF skills in academic performance and sHRQoL, and the need for routine screening of EF deficits and proactive supports. Supports may include cognitive rehabilitation and in-class accommodations. Overall, results compare favorably to XRT outcomes reported in the literature.


Assuntos
Neoplasias Encefálicas/psicologia , Neoplasias Encefálicas/radioterapia , Função Executiva , Terapia com Prótons/efeitos adversos , Qualidade de Vida , Sucesso Acadêmico , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Memória de Curto Prazo , Testes Neuropsicológicos , Resultado do Tratamento
9.
Artigo em Inglês | MEDLINE | ID: mdl-38469332

RESUMO

Background: Fathers of children and youth with special healthcare needs (FCYSHCN) are an overlooked population at risk for chronic stress. Mind-body practices offer a patient-centered approach to foster coping and resiliency, yet low engagement from fathers in existing programs suggests adaptation is needed. This multiphase study examines the feasibility of a synchronous, virtual mind-body intervention adapted for FCYSHCN. Methods: 31 FCYSHCN were recruited online via community partners and recruitment portals in an academic medical center in Boston, MA. Phase 1 consisted of individual interviews (N = 17) to determine fathers' stressors, coping strategies, program needs, and suggested adaptations to the intervention protocol. The Phase 2 single arm pilot feasibility trial (N = 14) consisted of eight weekly 60-minute group sessions delivered virtually. Primary feasibility metrics were attendance (benchmark: mean=6 sessions) and electronic survey completion at baseline and post-intervention. Acceptability was assessed using post-session ratings of program satisfaction (4-point Likert scale; scores ≥3 coded as helpful) and helpfulness (e.g., group structure). Exploratory outcomes included validated measures of stress coping, resiliency, parental stress, depression, anxiety, which were analyzed using paired-samples t-tests (alpha=.05) to generate effect sizes (η2). Results: In Phase 1, FCYSHCN discussed primary stressors (e.g., perceived inadequacy as a father) and multifaceted impacts of these stressors on physical, cognitive, emotional, and social wellbeing. Fathers also described coping strategies deemed helpful (e.g., humor) and unhelpful (e.g., "shutting down" from others). Qualitative findings informed intervention modifications. In Phase 2, most FCYSHCN (79%) attended ≥ 6 intervention sessions (mean=7). Follow-up survey completion was high (86%). Session satisfaction was high, with 7/8 sessions rated as helpful by most fathers. Program components deemed most helpful were the group structure, virtual delivery, exposure to a variety of relaxation and meditation skills, and the length of sessions. Although we were not powered to observe pre-post change, stress coping improved (p = .02, η2 = 0.42) and confidence increased in applying relaxation (p = .04, η2 = 0.34) and assertiveness techniques (p = .05, η2 = 0.31). Conclusions: The first mind-body resiliency program for FCYSHCN is feasible and acceptable. Further testing is warranted in randomized trials with diverse samples of fathers, an appropriate comparison arm, and longitudinal assessments of psychosocial and biobehavioral outcomes.

10.
Acad Pediatr ; 2024 Aug 22.
Artigo em Inglês | MEDLINE | ID: mdl-39181503

RESUMO

OBJECTIVE: To assess whether child food allergy is associated with family food insecurity, overall, and across different income levels. METHODS: We used the 2011-2018 National Health Interview Survey, a nationally representative cross-sectional survey. The exposure was child food allergy, and our main outcome was odds of family food insecurity, which was calculated using multivariable logistic regression models adjusted for child demographics, family characteristics and survey year. We examined for effect modification by the ratio of family income to the poverty threshold using stratification and tests for statistical interaction. RESULTS: Among 83,287 children 6% had food allergy and 22% experienced family food insecurity. Child food allergy was associated with a 1.39-fold (95% confidence interval [CI]: 1.26, 1.53) increased odds of family food insecurity overall. Child food allergy was associated with a 1.46-fold (95% CI: 1.29, 1.66) increased odds of family food insecurity among children whose families lived below 200% of the federal poverty level, and a 1.26-fold (95% CI: 1.05, 1.51) increased odds of family food insecurity among children whose families lived at 200 to 399% of the federal poverty level, with no association among children whose families lived at or above 400% of the federal poverty level (P =.04 for interaction). CONCLUSION: There is an association between child food allergy and family food insecurity, and this association is modified by the ratio of family income to the poverty threshold. Improved availability and subsidy of allergen-free foods in nutrition assistance programs and food pantries are urgently needed.

11.
Health Educ Behav ; : 10901981241275628, 2024 Sep 18.
Artigo em Inglês | MEDLINE | ID: mdl-39291801

RESUMO

Adapting interventions to new contexts requires consideration of the needs, norms, and delivery structures of the new setting. We describe how we followed the ORBIT model of intervention development to create Health Insurance Navigation Tools (HINT), a health insurance patient navigation intervention for childhood cancer survivors. By engaging stakeholders and leveraging institutional resources, we identified and preemptively addressed real-world barriers, which may improve the feasibility and efficacy of the intervention. Using evidence-based implementation science models to adapt and refine interventions enhances rigor and reproducibility, implements checks and balances, and surmounts challenges of intervention rollout to accelerate the delivery of health insurance education to childhood cancer survivors.

12.
JCO Oncol Pract ; 20(7): 953-963, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38471048

RESUMO

PURPOSE: Childhood cancer survivors are at increased risk for underinsurance and health insurance-related financial burden. Interventions targeting health insurance literacy (HIL) to improve the ability to understand and use health insurance are needed. METHODS: We codeveloped a four-session health insurance navigation tools (HINT) intervention, delivered synchronously by a patient navigator, and a corresponding booklet. We conducted a randomized pilot trial with survivors from the Childhood Cancer Survivor Study comparing HINT with enhanced usual care (EUC; booklet). We assessed feasibility, acceptability, and preliminary efficacy (HIL, primary outcome; knowledge and confidence with health insurance terms and activity) on a 5-month survey and exit interviews. RESULTS: Among 231 invited, 82 (32.5%) survivors enrolled (53.7% female; median age 39 years, 75.6% had employer-sponsored insurance). Baseline HIL scores were low (mean = 28.5; 16-64; lower scores better); many lacked knowledge of Affordable Care Act (ACA) provisions. 80.5% completed four HINT sessions, and 93.9% completed the follow-up survey. Participants rated HINT's helpfulness a mean of 8.9 (0-10). Exit interviews confirmed HINT's acceptability, specifically its virtual and personalized delivery and helpfulness in building confidence in understanding one's coverage. Compared with EUC, HINT significantly improved HIL (effect size = 0.94. P < .001), ACA provisions knowledge (effect size = 0.73, P = .003), psychological financial hardship (effect size = 0.64, P < .006), and health insurance satisfaction (effect size = 0.55, P = .03). CONCLUSION: Results support the feasibility and acceptability of a virtual health insurance navigation program targeted for childhood survivors to improve HIL. Randomized trials to assess the efficacy and sustainability of health insurance navigation on HIL and financial burden are needed.


Assuntos
Sobreviventes de Câncer , Seguro Saúde , Humanos , Feminino , Masculino , Projetos Piloto , Adulto , Navegação de Pacientes , Criança , Pessoa de Meia-Idade
13.
Ann Fam Med ; 11 Suppl 1: S90-8, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-23690392

RESUMO

PURPOSE: The aim of this study was to characterize essential factors to the medical home transformation of high-performing pediatric primary care practices 6 to 7 years after their participation in a national medical home learning collaborative. METHODS: We evaluated the 12 primary care practice teams having the highest Medical Home Index (MHI) scores after participation in a national medical home learning collaborative with current MHI scores, a clinician staff questionnaire (assessing adaptive reserve), and semistructured interviews. We reviewed factors that emerged from interviews and analyzed domains and subdomains for their agreement with MHI and adaptive reserve domains and subthemes using a process of triangulation. RESULTS: At 6 to 7 years after learning collaborative participation, 4 essential medical home attributes emerged as drivers of transformation: (1) a culture of quality improvement, (2) family-centered care with parents as improvement partners, (3) team-based care, and (4) care coordination. These high-performing practices developed comprehensive, family-centered, planned care processes including flexible access options, population approaches, and shared care plans. Eleven practices evolved to employ care coordinators. Family satisfaction appeared to stem from better access, care, and safety, and having a strong relationship with their health care team. Physician and staff satisfaction was high even while leadership activities strained personal time. CONCLUSIONS: Participation in a medical home learning collaborative stimulated, but did not complete, medical home changes in 12 pediatric practices. Medical home transformation required continuous development, ongoing quality improvement, family partnership skills, an attitude of teamwork, and strong care coordination functions.


Assuntos
Assistência Centrada no Paciente/estatística & dados numéricos , Pediatria/estatística & dados numéricos , Atenção Primária à Saúde/estatística & dados numéricos , Humanos , Inovação Organizacional , Assistência Centrada no Paciente/organização & administração , Atenção Primária à Saúde/organização & administração
14.
Support Care Cancer ; 21(2): 377-83, 2013 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-22717916

RESUMO

PURPOSE: The Affordable Care Act (ACA) will expand health insurance options for cancer survivors in the USA. It is unclear how this legislation will affect their access to employer-sponsored health insurance (ESI). We describe the health insurance experiences for survivors of childhood cancer with and without ESI. METHODS: We conducted a series of qualitative interviews with 32 adult survivors from the Childhood Cancer Survivor Study to assess their employment-related concerns and decisions regarding health insurance coverage. Interviews were performed from August to December 2009 and were recorded, transcribed, and content analyzed using NVivo 8. RESULTS: Uninsured survivors described ongoing employment limitations, such as being employed at part-time capacity, which affected their access to ESI coverage. These survivors acknowledged they could not afford insurance without employer support. Survivors on ESI had previously been denied health insurance due to their preexisting health conditions until they obtained coverage through an employer. Survivors feared losing their ESI coverage, which created a disincentive to making career transitions. Others reported worries about insurance rescission if their cancer history was discovered. Survivors on ESI reported financial barriers in their ability to pay for health care. CONCLUSIONS: Childhood cancer survivors face barriers to obtaining ESI. While ACA provisions may mitigate insurance barriers for cancer survivors, many will still face cost barriers to affording health care without employer support.


Assuntos
Planos de Assistência de Saúde para Empregados/economia , Acessibilidade aos Serviços de Saúde/economia , Cobertura do Seguro/economia , Neoplasias/economia , Patient Protection and Affordable Care Act/economia , Adulto , Criança , Tomada de Decisões , Emprego/economia , Emprego/psicologia , Emprego/estatística & dados numéricos , Feminino , Planos de Assistência de Saúde para Empregados/legislação & jurisprudência , Planos de Assistência de Saúde para Empregados/tendências , Acessibilidade aos Serviços de Saúde/legislação & jurisprudência , Humanos , Cobertura do Seguro/legislação & jurisprudência , Cobertura do Seguro/tendências , Masculino , Pessoas sem Cobertura de Seguro de Saúde/estatística & dados numéricos , Entrevista Motivacional , Neoplasias/complicações , Patient Protection and Affordable Care Act/normas , Pesquisa Qualitativa , Sobreviventes/psicologia , Sobreviventes/estatística & dados numéricos , Desemprego/estatística & dados numéricos , Estados Unidos
15.
Acad Pediatr ; 23(6): 1196-1203, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36871611

RESUMO

OBJECTIVE: The purpose of the current study was to explore provider perspectives on the strengths and challenges of telehealth services (e.g., behavioral interventions, physical, speech, and occupational therapy, medication management) for children with autism spectrum disorder during coronavirus disease 2019 related shutdowns. METHODS: From September 2020 to May 2021, we conducted qualitative interviews with 35 providers across multiple disciplines from 17 sites in the Autism Care Network. Qualitative data were analyzed using a framework approach and common themes were identified. RESULTS: Providers across clinical disciplines identified strengths of the virtual model, such as its flexibility and the opportunity it provided to see children in their home environment. They also indicated that some interventions worked better virtually than others, and that there were several factors that impacted their success. Respondents were generally satisfied providing parent-mediated interventions but expressed mixed satisfaction in using telehealth for direct-to-patient care. CONCLUSIONS: Results suggest that telehealth services for children with autism spectrum disorder could be a helpful tool in decreasing barriers and improving service delivery, especially when tailored to the individual needs of the patient. More research is needed on the factors contributing to its success in order to eventually inform clinical guidelines regarding the prioritization of children seen for in-person visits.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , COVID-19 , Telemedicina , Humanos , Criança , Transtorno do Espectro Autista/terapia , Pandemias
16.
MethodsX ; 11: 102332, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37649622

RESUMO

Anxiety is a common comorbidity for individuals with ASD, and there is some preliminary data about the efficacy of physical exercise to alleviate anxiety. However, we are not aware of any studies that have compared the effects of a physical exercise program on anxiety in underserved children with ASD using a randomized controlled research design. This paper describes a method to evaluate and compare the efficacy of an 8-week physical exercise intervention with a sedentary play intervention to alleviate anxiety in young children with autism spectrum disorders (ASD) from underserved backgrounds. We assessed anxiety and its physical symptoms using the parent-rated Child Behavior Checklist DSM-5 anxiety (CBCL DSM-5) subscale, the child-rated Screen for Childhood Anxiety Related Emotional Disorder (SCARED), the parent-rated Child's Sleep Habits Questionnaire (CSHQ), and salivary cortisol. We also utilized the Physical Activity Questionnaire for Older Children (PAQ-C) to assess physical activity level and identify compounds. Unique components of this study include: •Implementation of novel physical exercise and sedentary play interventions that have been designed for children with ASD.•Recruitment of predominantly underserved and non-English speaking families.

17.
Acad Pediatr ; 23(6): 1187-1195, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36460184

RESUMO

BACKGROUND /OBJECTIVES: Neurotypical siblings (NT siblings) of children with autism spectrum disorder (ASD) are at elevated risk for emotional distress and adjustment problems. Resiliency is the ability to cope and adapt with ongoing stressors. We conducted a randomized waitlist-controlled pilot trial to examine the feasibility, acceptability, and preliminary efficacy of an adapted virtual mind-body resiliency group intervention for teen NT siblings of children with ASD. METHODS: We modified the Stress Management and Resiliency Training-Relaxation Response Resiliency Program for NT siblings of children with ASD (SibChat). We randomly assigned teens (aged 14-17) to immediate intervention (IG) versus waitlist control (WLC). The intervention included eight 60-minute weekly video conference group sessions. We assessed feasibility (enrollment, attendance, and retention) and acceptability (post treatment survey and weekly relaxation response practice). We explored group differences in pre-post change scores for 1) stress coping (Measure of Current Status-A) and 2) resiliency (Current Experiences Scale) using independent samples t tests and effect size calculations. RESULTS: We enrolled 83% of screened eligible teens. A total of 90% IG and 75% WLC participants attended at least 6/8 sessions. Among IG participants who completed the post treatment survey, 79% reported practicing relaxation response exercises at least "a few times a week". Comparing change in baseline to time 1, the IG showed better relative changes than the WLC group in stress coping (d = 0.60) and resiliency (d = 0.24). CONCLUSIONS: Our pilot trial showed promising feasibility, acceptability, and preliminary efficacy of SibChat on at least one of the 2 primary outcomes supporting further testing of the SibChat intervention. CLINICAL TRIAL REGISTRATION: US National Library of Medicine. REGISTRATION NUMBER: NCT04369417. https://clinicaltrials.gov/ct2/show/NCT04369417.


Assuntos
Transtorno do Espectro Autista , Adolescente , Humanos , Criança , Transtorno do Espectro Autista/terapia , Projetos Piloto , Irmãos , Adaptação Psicológica
18.
Acad Pediatr ; 2023 Nov 02.
Artigo em Inglês | MEDLINE | ID: mdl-37925071

RESUMO

OBJECTIVE: Understanding the types of functional challenges faced by adolescents and young adults with disabilities (AYA-WD) can help payers, clinicians, community-based service providers, and policymakers recognize and meet needs. This paper describes state-level prevalence rates for 1) AYA-WD overall and for 2) impairment types singly and in combinations; and 3) examines how rates may differ between those insured by Medicaid versus commercial insurance. METHODS: This descriptive study uses Colorado's All Payer Claims Dataset 2014-2018 to identify insured 10- to 26-year-olds (Medicaid only: 333,931; commercially only: 392,444). It then applies the previously validated Children with Disabilities Algorithm (CWDA) and its companion, the Diagnosis-to-Impairment-Type Algorithm (DITA), to compare state-level prevalence rates by insurance source for disability overall and for each of five impairment types singly and in combination. RESULTS: Disability prevalence was greater among the Medicaid-insured AYA-WD by +7.6% points (pp)-Medicaid: 11.9% (47,654/333,931), commercial: 4.3% (16,907/392,444). Most AYA-WD had a single impairment, but the prevalence of AYA-WD with two or more impairments was greater among the Medicaid-insured than the commercially insured (+9.9 pp; Medicaid: 33.5% [15,963/47,654], commercial: 23.7% [3992/16, 907]), as was the prevalence of impairment types that were physical (+6.7 pp; Medicaid: 54.7% [26,054/47,654], commercial: 48.0% [8121/16,907]); developmental (+4.1 pp; Medicaid: 35.4% [16,874/47,654], commercial: 31.3% [5290/16,907]); psychiatric (+6.7 pp; Medicaid 21.3% [10,175/47,654], commercial: 14.6% [2470/16,907]), and intellectual (+9.3 pp; Medicaid: 26.2% [12,501/47,654], commercial: 16.9% [2858/16,907]). CONCLUSIONS: CWDA and DITA can be used to understand the rates at which impairment types and combinations occur in a population with childhood-onset disabilities.

19.
Child Obes ; 19(8): 507-514, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-36315223

RESUMO

Background: Despite modest mean body mass index (BMI) improvements in pediatric weight management interventions (PWMIs), some children are more and less successful in achieving a healthier weight. We sought to understand key behavior modifications and strategies used to overcome barriers that led to success or nonresponse. Methods: Using a semistructured guide, we conducted interviews in English and Spanish to explore the perspectives of caregivers whose children responded (BMI z-score change of greater than or equal to -0.2 units over 1 year) or did not respond (≥5% increase in % of the 95th percentile for BMI over 1 year) to a PWMI. Interviews were recorded, transcribed, and then coded using the framework approach. Researchers met regularly to review coding, content, and emerging themes. Results: We reached thematic saturation after interviewing the caregivers of 14 responders and 16 nonresponders and identified 7 themes as key elements of a positive response: (1) positive parenting approach; (2) application and practice of new information; (3) higher agency for change; (4) management of unmet social needs through creative solutions; (5) promoting mindful eating; (6) family alignment on health behaviors; and (7) mitigation of weight stigma. Conclusion: The effectiveness of PWMI may be enhanced by incorporating curricular elements that specifically promote the approaches identified among responders in this study. Similarly, lessons can be learned from nonresponders, so clinicians can identify and help early on when behaviors associated with nonresponse are seen. Clinical Trial Registration number: ClinicalTrials.gov: NCT03012126.


Assuntos
Obesidade Infantil , Criança , Humanos , Obesidade Infantil/prevenção & controle , Índice de Massa Corporal , Redução de Peso , Comportamentos Relacionados com a Saúde , Poder Familiar
20.
J Autism Dev Disord ; 53(9): 3683-3699, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-35831693

RESUMO

A randomized controlled trial established initial efficacy of a novel parent training (PT) intervention for improving oral hygiene and oral health in underserved children with ASD (Fenning et al., 2022), a population at risk for unmet dental needs. The present study describes our emic approach to PT development alongside treatment outcome data examining feasibility, acceptability, and engagement. Families with Medicaid-eligible children with ASD ages 3 to 13 years (85% male, 62% with intellectual disability) were assigned to receive PT (n = 60) or a psychoeducational toolkit (n = 59). Results indicate strong retention, fidelity, and adherence, with quantitative and qualitative metrics revealing high treatment satisfaction and utilization. Discussion focuses on implications for individualizing treatment to optimize engagement of underrepresented families.


Assuntos
Transtorno do Espectro Autista , Humanos , Criança , Masculino , Feminino , Transtorno do Espectro Autista/terapia , Pais/educação , Resultado do Tratamento , Comportamentos Relacionados com a Saúde
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