RESUMO
BACKGROUND: The process of transition to adult-based care encompasses a critical period in the life of an adolescent and young adult living with a chronic illness and one that comes with an increase in the risk of poor health outcomes. As yet, there is a dearth of empirical data to help optimize this process to ensure the best long-term outcome. METHODS: This study used a principal components analysis to determine specific constructs measured by a revised version of the transition readiness survey used in our clinic. We investigated changes in these constructs over time. We further investigated the relationship between the change in these constructs over time spent in a focused transition program with adherence. RESULTS: The primary component underlying our transition readiness survey for patients and parents represented self-efficacy. Time spent in the transition program was an independent predictor of change in self-efficacy (rho 0.299, p = .015); however, the magnitude of that change had no relationship to adherence. Change in parent-proxy self-efficacy was found to have a statistically significant relationship with tacrolimus standard deviation (rho -0.301, p = .026). There was disagreement identified between patient and parent responses on the survey. Neither change in patient nor parent reports of self-efficacy was found to have a relationship with post-transfer adherence. CONCLUSIONS: This study reaches the novel conclusion that self-efficacy and parent-proxy self-efficacy are dynamic concepts that change over time spent in a focused transition program. The patient-parent disagreement and the relationship between parent-proxy self-efficacy and adherence stress the importance of involving parents/guardians in the transition process as well.
Assuntos
Transplante de Fígado , Transição para Assistência do Adulto , Adolescente , Adulto Jovem , Humanos , Criança , Autoeficácia , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: Corticosteroids have long been used to treat inflammatory bowel disease. However, cumulative corticosteroid exposure is associated with adverse effects, particularly in growing children. Professional guidelines recommend steroid-sparing strategies. It remains unknown whether corticosteroid use has decreased in children with inflammatory bowel disease. METHODS: We performed retrospective cohort study using data from 2007 to 2018 from the international multi-center ImproveCareNow Network, a pediatric inflammatory bowel disease quality improvement collaborative. Pediatric patients diagnosed with inflammatory bowel disease were included. Patients with missing diagnosis or corticosteroid use data were excluded. We performed serial cross-sectional analyses of period prevalence and used multivariate regression models. RESULTS: 27,321 patients were included (65% Crohn disease, 28% ulcerative colitis, 7% indeterminate colitis). Corticosteroids were used in 10,206 (37%). Corticosteroid use decreased from 28% (2007) to 12% (2018). Black patients received corticosteroids more commonly than white patients. This disparity improved as corticosteroid use decreased in both groups. Most corticosteroid use occurred <120âdays after diagnosis. Corticosteroid or 5-aminosalicylate use <120âdays after diagnosis predicted later corticosteroid use. Anti-tumor necrosis factor-alpha medication use <120âdays after diagnosis was associated with a reduction in corticosteroid use. As corticosteroid use decreased, steroid-sparing therapy use increased and height and weight z scores improved, particularly among children with Crohn disease. Despite improvement across the network, variation in corticosteroid usage remains. CONCLUSIONS: Corticosteroid use among pediatric patients with inflammatory bowel disease in the ImproveCareNow Network has decreased over time. Racial disparities in corticosteroid use were found, but gradually improved.
Assuntos
Colite Ulcerativa , Colite , Doenças Inflamatórias Intestinais , Sistema de Aprendizagem em Saúde , Corticosteroides/uso terapêutico , Criança , Colite Ulcerativa/tratamento farmacológico , Estudos Transversais , Humanos , Doenças Inflamatórias Intestinais/tratamento farmacológico , Estudos RetrospectivosRESUMO
Despite major discoveries, traditional biomedical research has not always addressed topics perceived as priorities by patients and their families. Patient-centered care is predicated on research taking such priorities into account. The present study surveyed women with Turner syndrome (TS; 18+ years; n = 543), parents of women with TS (n = 232), and parents of younger daughters with TS (<18 years; n = 563), regarding their priorities for research. The study also included a quantitative audit of research categorized as either predominantly biomedical or psychological in the medical and other scientific literature. The overwhelming majority of all surveyed stakeholders (84% and higher) rated both biomedical and psychological research in TS as "very important," yet only approximately 9% of published research focused on psychological aspects of TS. The odds of women with TS identifying psychological research as "most important" was significantly lower (OR: 0.607; 95% CI: 0.375, 0.982] than the odds of parents making the same prioritization. Despite the majority of participants rating research as very important, only approximately half-rated participation in research as similarly important. The majority of respondents in all three groups (59%-73%) indicated they would "very likely" participate in research pertaining to eating or nutrition, quality of life, or genetic studies in TS. Substantially fewer expressed similar eagerness to participate in studies involving the study of a new medicine or medical device. Increased engagement of patient and family stakeholders in research requires that investigators select topics of study important to that community.
Assuntos
Participação do Paciente , Pesquisa , Síndrome de Turner , Adolescente , Adulto , Feminino , Humanos , Participação do Paciente/psicologia , Inquéritos e Questionários , Síndrome de Turner/psicologia , Adulto JovemRESUMO
Parents of pediatric liver and kidney transplant recipients were surveyed regarding their current education plans (eg, Individualized Education Program, 504), satisfaction with these plans, and interest in educational support from the psychosocial transplant team. Survey results indicate high rates of IEP and 504 plans, academic and related services, and accommodations among this population. The majority of parents/guardians reported satisfaction with their child's current school plan and did not report need for additional transplant team support specific to school services on the survey measure. However, other information highlights the importance for pediatric transplant teams to consider other ways to support this population's educational needs.
Assuntos
Doença Hepática Terminal/cirurgia , Falência Renal Crônica/cirurgia , Transplante de Rim , Transplante de Fígado , Avaliação das Necessidades , Melhoria de Qualidade , Adolescente , Criança , Pré-Escolar , Educação Inclusiva , Doença Hepática Terminal/psicologia , Família/psicologia , Feminino , Humanos , Falência Renal Crônica/psicologia , Acontecimentos que Mudam a Vida , Masculino , Pais/psicologia , Planejamento de Assistência ao Paciente , Satisfação do Paciente , Cuidados Pós-Operatórios , Instituições Acadêmicas , Estudantes/psicologiaRESUMO
BACKGROUND: Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end-of-life care needs of this growing population of young people. This study characterized current practices, beliefs, and challenges specific to the disclosure of prognosis and end-of-life care topics among providers caring for pediatric organ failure and transplant populations. METHODS: This cross-sectional study included 144 healthcare providers actively caring for children, adolescents, and young adults with organ failure or solid organ transplant history. Participants completed an electronic survey measuring frequency and comfort in discussing the following topics with patients and parents: prognosis/survival statistics, re-transplantation, advance care planning (ACP), and death/dying. Descriptive statistics, two-sample t tests, and analysis of variance were used. RESULTS: Fewer than half of respondents regularly discuss prognosis/survival statistics and potential need for re-transplantation with their pediatric and young adult patients. Less than 20% of providers engage their pediatric patients in ACP discussions, and approximately 30% facilitate such discussions with young adult patients. Pediatric organ failure and transplant providers endorse a number of barriers specific to discussing these topics. CONCLUSION: Pediatric organ failure and transplant providers do not regularly discuss prognosis or end-of-life care topics with this patient population. Communication-focused intervention research is needed to improve honest and compassionate discussion of these topics that is aligned with both patients' and parents' needs and preferences.
Assuntos
Planejamento Antecipado de Cuidados , Comunicação , Insuficiência de Múltiplos Órgãos/diagnóstico , Relações Profissional-Paciente , Assistência Terminal/métodos , Transplantados , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Masculino , Pais , Prognóstico , Inquéritos e Questionários , Resultado do Tratamento , Revelação da Verdade , Estados Unidos , Adulto JovemRESUMO
OBJECTIVES: Thiopurines, commonly used to treat inflammatory bowel disease, cause lymphopenia and red blood cell macrocytosis, requiring therapeutic monitoring. Mean corpuscular volume/white blood cell (MCV/WBC) ratio has been proposed as a surrogate for therapeutic monitoring. Our aim was to investigate MCV/WBC ratio for assessing clinical response to thiopurines among pediatric patients with inflammatory bowel disease. METHODS: We performed a retrospective cross-sectional study at a tertiary care center using laboratory results and standardized physician global assessments (PGA) among pediatric patients taking thiopurines. Erythrocyte sedimentation rate (ESR), C-reactive protein (CRP), fecal calprotectin, and 6-thioguanine nucleotides were assessed when available. The primary outcome was association between MCV/WBC ratio and clinical remission assessed by ESR, CRP, calprotectin, or PGA. We also used a composite outcome requiring all available data to be normal. Analyses were limited to 1 occurrence per patient, >60 days after starting thiopurine, and comparators were required to be within 14 days of one another. RESULTS: A total of 471 patients met inclusion criteria. MCV/WBC ratio poorly predicted quiescent disease as defined by PGA (area under receiver operating characteristic curve [AuROC] 0.55, 95% confidence interval [CI] 0.43-0.66). MCV/WBC ratio better predicted quiescent disease defined as normal CRP (AuROC 0.64, 95% CI 0.58-0.70) or normal ESR (AuROC 0.59, 95% CI 0.52-0.66). When the composite outcome measure was used, MCV/WBC ratio had an AuROC of 0.65 (95% CI 0.59-0.70), indicating it is reasonably accurate in discriminating between clinical remission and active disease. CONCLUSIONS: MCV/WBC ratio is a noninferior, easy, and low-cost alternative to thiopurine metabolite monitoring.
Assuntos
Colite Ulcerativa/sangue , Colite Ulcerativa/tratamento farmacológico , Doença de Crohn/sangue , Doença de Crohn/tratamento farmacológico , Índices de Eritrócitos , Contagem de Leucócitos , Adolescente , Área Sob a Curva , Azatioprina/uso terapêutico , Proteína C-Reativa/metabolismo , Criança , Estudos Transversais , Fezes/química , Feminino , Nucleotídeos de Guanina/sangue , Humanos , Imunossupressores/uso terapêutico , Complexo Antígeno L1 Leucocitário/análise , Masculino , Mercaptopurina/uso terapêutico , Valor Preditivo dos Testes , Curva ROC , Estudos Retrospectivos , Índice de Gravidade de Doença , Tionucleotídeos/sangue , Adulto JovemRESUMO
Across pediatric organ transplant populations, patient and family psychosocial functioning is associated with important health-related outcomes. Research has suggested that pediatric heart transplant recipients and their families are at increased risk for adverse psychosocial outcomes; however, recent investigation of psychosocial functioning in this population is lacking. This study aimed to provide a contemporary characterization of psychosocial functioning in pediatric heart transplant recipients and their families. Associations between psychosocial function, demographic variables, and transplant-related variables were investigated. Fifty-six parents/guardians of pediatric heart transplant recipients completed a comprehensive psychosocial screening measure during transplant follow-up clinic visits. Descriptive statistics, correlational analyses, and independent samples t tests were performed. Forty percent of pediatric heart transplant recipients and their families endorsed clinically meaningful levels of total psychosocial risk. One-third of patients presented with clinically significant psychological problems per parent report. Psychosocial risk was unassociated with demographic or transplant-related factors. Despite notable improvements in the survival of pediatric heart transplant recipients over the past decade, patients and families present with sustained psychosocial risks well beyond the immediate post-transplant period, necessitating mental health intervention to mitigate adverse impact on health-related outcomes.
Assuntos
Família/psicologia , Transplante de Coração/psicologia , Transtornos Mentais/etiologia , Complicações Pós-Operatórias , Adolescente , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Lactente , Recém-Nascido , Masculino , Transtornos Mentais/diagnóstico , Complicações Pós-Operatórias/diagnóstico , Qualidade de Vida/psicologia , Medição de Risco , Fatores de Risco , Adulto JovemRESUMO
BACKGROUND: Although perianal complications of Crohn disease (CD) are commonly encountered in clinical practice, the epidemiology of perianal CD among populations of children is poorly understood. We sought to characterize the prevalence of perianal disease in a large and diverse population of pediatric patients with CD. METHODS: We conducted retrospective analyses from a prospective observational cohort, the ImproveCareNow Network (May 2006-October 2014), a multicenter pediatric inflammatory bowel disease quality improvement collaborative. Clinicians prospectively documented physical examination and phenotype classification at outpatient visits. Perianal examination findings and concomitant phenotype change were used to corroborate time of new-onset perianal disease. Results were stratified by age, sex, and race and compared across groups with logistic regression. Cumulative incidence was estimated using Kaplan-Meier analyses and compared between groups with Cox proportional hazard regression models. RESULTS: The registry included 7076 patients with CD (41% girls). Missing/conflicting entries resulted in 397 (6%) patient exclusions. Among the remaining 6679 cases, 1399 (21%) developed perianal disease. Perianal disease was more common among boys (22%) than girls (20%; Pâ=â0.013) and developed sooner after diagnosis among those with later rather than early onset disease (Pâ<â0.001). Perianal disease was also more common among blacks (26%) compared with whites (20%; Pâ=â0.017). Asians with later onset CD developed perianal disease earlier in their disease course (Pâ=â0.01). There was no association between disease location or nutritional status at diagnosis and later development of perianal disease. CONCLUSIONS: In this large multicenter collaborative, we found that perianal disease is more common among children with CD than previously recognized. Differences in the development of perianal disease were found across racial and other subgroups. Treatment strategies are needed to prevent perianal disease development.
Assuntos
Doenças do Ânus/etiologia , Doença de Crohn/complicações , Adolescente , Doenças do Ânus/diagnóstico , Doenças do Ânus/epidemiologia , Criança , Doença de Crohn/diagnóstico , Feminino , Seguimentos , Humanos , Estimativa de Kaplan-Meier , Modelos Logísticos , Masculino , Fenótipo , Prevalência , Modelos de Riscos Proporcionais , Sistema de Registros , Estudos Retrospectivos , Fatores de Risco , Reino Unido , Estados UnidosRESUMO
OBJECTIVE: Transition may be associated with poor health outcomes, but limited data exist regarding inflammatory bowel disease (IBD). Acquisition of self-management skills is believed to be important to this process. IBD-specific checklists of such skills have been developed to aid in transition, but none has been well studied or validated. This study aimed to describe self-assessment ability to perform tasks on one of these checklists and to explore the relation between patient age and disease duration. METHODS: Patients ages 10 to 21 years with IBD were recruited. An iPad survey queried the patients for self-assessment of ability to perform specific self-management tasks. Task categories included basic knowledge of IBD, doctor visits, medications and other treatments, and disease management. Associations with age and disease duration were tested with Spearman rank correlation. RESULTS: A total of 67 patients (31 boys) with Crohn disease (nâ=â40), ulcerative colitis (nâ=â25), and indeterminate colitis (nâ=â2) participated in the study. Mean patient age was 15.8â±â2.5 years, with median disease duration of 5 years (2 months-14 years). The proportion of patients who self-reported ability to complete a task without help increased with age for most tasks, including "telling others my diagnosis" (ρâ=â0.43, Pâ=â0.003), "telling medical staff I do not like or am having trouble following a treatment" (ρâ=â0.37, Pâ=â0.003), and "naming my medications" (ρâ=â0.28, Pâ=â0.02). No task significantly improved with disease duration. CONCLUSIONS: Self-assessment of ability to perform some key tasks of transition appears to improve with age, but not with disease duration. More important, communication with the medical team did not improve with age, despite being of critical importance to functioning within an adult care model.
Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Doenças Inflamatórias Intestinais/terapia , Cooperação do Paciente , Autocuidado , Transição para Assistência do Adulto , Adolescente , Adulto , Lista de Checagem , Criança , Colite/terapia , Colite Ulcerativa/terapia , Terapia Combinada , Doença de Crohn/terapia , Estudos Transversais , Feminino , Humanos , Internet , Masculino , Michigan , Ambulatório Hospitalar , Adulto JovemRESUMO
Given the increased risk for non-adherence and poor health outcomes in late adolescence, there is a need for better methods to evaluate and improve the transition process as adolescent patients are prepared to be independent adults. This study assessed the psychometrics and concurrent validity of a newly developed measure of AoR for health management in pediatric liver transplant patients. A total of 48 patients and 37 parents completed a 13-item measure of AoR. We performed an exploratory PCA on survey results and used component scores to assess the relationship between AoR and age, age at transplant, adherence, and health outcomes. Two primary components were identified: communication with the healthcare system and self-management tasks. Parent perception of adolescent responsibility for tasks related to communicating with the healthcare system was correlated, in younger patients, with increased non-adherence while responsibility for tasks related to self-management was correlated, in older patients, with decreased non-adherence. These results support AoR as a two-domain construct, and they provide targets for monitoring and intervention as adolescent patients advance toward transfer.
Assuntos
Transplante de Fígado , Transição para Assistência do Adulto , Transplantados , Adolescente , Criança , Comunicação , Feminino , Humanos , Imunossupressores/uso terapêutico , Masculino , Cooperação do Paciente , Relações Profissional-Paciente , Psicometria , Melhoria de Qualidade , Autocuidado , Inquéritos e Questionários , Resultado do TratamentoRESUMO
The transition from pediatric to adult transplant care is a high risk period for non-adherence and poor health outcomes. This article describes a quality improvement initiative integrated into a pediatric liver transplant program that focused on improving outcomes following the transfer from pediatric to adult liver transplant care. Using improvement science methodology, we evaluated the impact of our center's transition readiness skills (TRS) program by conducting a chart review of 45 pediatric liver transplant recipients who transferred to adult transplant care. Medication adherence, clinic attendance, and health status variables were examined for the year pre-transfer and first year post-transfer. 19 recipients transferred without participating in the TRS program (control group) and 26 recipients participated in the program prior to transferring to the adult clinic (TRS group). The TRS group was significantly older at the time of transfer, more adherent with medications, and more likely to attend their first adult clinic visit compared to the control group. Among the TRS group, better adolescent and parent regimen knowledge were associated with greater adherence to post-transfer clinic appointments. Transition planning should focus on the gradual shift in responsibility for health management tasks, including clinic attendance, from parent to adolescent. There may be support for extending transition support for at least 1 year post-transfer to promote adherence.
Assuntos
Transplante de Fígado , Avaliação de Resultados em Cuidados de Saúde/estatística & dados numéricos , Cooperação do Paciente/estatística & dados numéricos , Melhoria de Qualidade/estatística & dados numéricos , Transição para Assistência do Adulto/estatística & dados numéricos , Adulto , Nível de Saúde , Humanos , Adesão à Medicação , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVES: Infliximab is used increasingly to treat inflammatory bowel disease (IBD). Infliximab is supplied in 100-mg vials. Doses that are typically calculated as 5 mg · kg⻹ · dose⻹ are commonly rounded up or down to the nearest 100 mg. Variation in dosing practices is unknown. Underdosing based on weight may increase the risk for disease exacerbation, whereas overimmune suppression could increase the risk of infection. Children may be at greater risk from dosage rounding. We aimed to characterize infliximab dosing practices, the use of corticosteroid premedication, and duration of infusions among pediatric practitioners participating in the ImproveCareNow Network, a national collaboration to improve IBD care and outcomes. METHODS: A national survey of infliximab dosing practices was sent to 279 pediatric IBD practitioners from March to December 2011. Double data reconciliation, t test, and χ² analyses were performed. RESULTS: The response rate was 74% (N = 207). Thirty-eight percent (78/207) indicated that their practice has no uniform approach to the rounding of doses. Of 114 respondents indicating a uniform approach to rounding doses, 43% always round up to the nearest 100 mg, 33% always round up or down to the nearest 100 mg, and 14% never round doses. In addition, 28% of respondents always premedicate with corticosteroids and 12% never premedicate. Of respondents indicating "it depends," 95% premedicate if there has been a previous infusion reaction, 46% if there has been a prolonged lapse between treatment doses, 40% if antibodies to infliximab are present, and 11% if giving infliximab monotherapy. The duration of infusions is most often 2 hours, but varies between 1 and 4 hours. CONCLUSIONS: Wide variation exists in the practice of infliximab administration in pediatric IBD. The effect of these variations on outcomes is unknown.
Assuntos
Anticorpos Monoclonais/administração & dosagem , Fármacos Gastrointestinais/administração & dosagem , Imunossupressores/administração & dosagem , Doenças Inflamatórias Intestinais/tratamento farmacológico , Padrões de Prática Médica , Adolescente , Corticosteroides/uso terapêutico , Anti-Inflamatórios/uso terapêutico , Anticorpos Monoclonais/efeitos adversos , Anticorpos Monoclonais/uso terapêutico , Criança , Cálculos da Dosagem de Medicamento , Hipersensibilidade a Drogas/complicações , Fármacos Gastrointestinais/efeitos adversos , Fármacos Gastrointestinais/uso terapêutico , Pesquisas sobre Atenção à Saúde , Humanos , Imunossupressores/efeitos adversos , Imunossupressores/uso terapêutico , Doenças Inflamatórias Intestinais/complicações , Doenças Inflamatórias Intestinais/imunologia , Infliximab , Infusões Intravenosas , Londres , Pré-Medicação , Estados Unidos , Instituições Filantrópicas de SaúdeRESUMO
OBJECTIVE: Racial and ethnic disparities are commonplace in health care. Research often relies on sociodemographic information recorded in the electronic health record (EHR). Little evidence is available about the accuracy of EHR-recorded sociodemographic information, and none in pediatrics. Our objective was to determine the accuracy of EHR-recorded race and ethnicity compared to self-report. METHODS: Patients/guardians enrolled in two prospective observational studies (10/2014-1/2019) provided self-reported sociodemographic information. Corresponding EHR information was abstracted. EHR information was compared to self-report, considered "gold standard." Agreement was evaluated with Cohen's kappa. RESULTS: A total of 503 patients (42% female, median age 12.8 years) were identified. Self-reported race (N = 484) was 73% White, 16% Black or African American (AA), 4% Asian, 5% multiracial, and 2% other. Self-reported ethnicity (N = 410) was 9% Hispanic/Latino, and 88% non-Hispanic/Latino. Agreement between self-reported and EHR-recorded race was substantial (kappa = 0.77, 95% CI 0.72-0.83). Race was discordant among 10% (47/476). Hispanic/Latino ethnicity also had strong agreement (kappa = 0.77, 95% CI 0.65-0.89). Among those who self-reported Hispanic/Latino and reported race (N = 21), race was less accurately recorded in the EHR (kappa = 0.26, 95% CI 0-0.54). Race did not match among 43% with recorded race (9/21). Among self-reported racial and/or ethnic minorities, 13% (12/164) were misclassified in the EHR as non-Hispanic White. CONCLUSIONS: We found race and ethnicity are often inaccurately recorded in the EHR for patients who self-identify as minorities, leading to under-representation of minorities in the EHR. Inaccurately recorded race and ethnicity has important implications for disparity research, and for informing health policy. Reliable processes are needed to incorporate self-reported race and ethnicity in the EHR at institutional and national levels.
Assuntos
Registros Eletrônicos de Saúde , Etnicidade , Grupos Raciais , Autorrelato , Criança , Feminino , Humanos , Masculino , Hispânico ou Latino , Grupos Minoritários , Negro ou Afro-Americano , BrancosRESUMO
Among adult liver transplant recipients (LTRs), sleep disturbances and fatigue are common. Sleep problems following pediatric liver transplantation may contribute to daytime fatigue and lower health-related quality of life (HRQOL). The aim of this cross-sectional study was to determine the impact of sleep problems on the HRQOL of pediatric LTRs using validated measures. Participants included 47 LTRs. Mean age of the LTRs was 10.9 ± 4.6 years, and mean time since transplantation was 6.2 ± 3.9 years. The primary indication for transplantation was biliary atresia (51%). According to parent reports, pediatric transplant recipients had symptoms of sleep-disordered breathing, excessive daytime sleepiness, daytime behavior problems, and restless legs; 40.4% of parents and 43.8% of children reported significantly lower total HRQOL for the recipients. Age, time since transplantation, and health status were not significantly related to the quality of life. Hierarchical regression analyses revealed that the sleep-disordered breathing subscale of the Pediatric Sleep Questionnaire accounted for significant variance in parent-proxy reports on the Pediatric Quality of Life (PedsQL) summary scales measuring children's psychosocial health (R(2) = 0.36, P < 0.001), physical health (R(2) = 0.19, P = 0.004), and total HRQOL (R(2) = 0.35, P < 0.001). Also, the sleep-disordered breathing subscale accounted for significant variance in the child self-reported school functioning scale (R(2) = 0.18, P = 0.03). Clinically significant sleep problems were more common among children with low total HRQOL. In conclusion, sleep problems were common in this cohort of pediatric LTRs and predicted significant variance in HRQOL. Prospective larger scale studies are needed to assess factors that contribute to sleep difficulties and low HRQOL in this population. The detection and treatment of significant sleep problems may benefit the HRQOL of pediatric LTRs.
Assuntos
Transplante de Fígado/estatística & dados numéricos , Complicações Pós-Operatórias/epidemiologia , Complicações Pós-Operatórias/psicologia , Qualidade de Vida , Transtornos do Sono-Vigília/epidemiologia , Transtornos do Sono-Vigília/psicologia , Adolescente , Criança , Distúrbios do Sono por Sonolência Excessiva/epidemiologia , Distúrbios do Sono por Sonolência Excessiva/psicologia , Feminino , Nível de Saúde , Humanos , Masculino , Síndrome da Mioclonia Noturna/epidemiologia , Síndrome da Mioclonia Noturna/psicologia , Prevalência , Análise de Regressão , Síndrome das Pernas Inquietas/epidemiologia , Síndrome das Pernas Inquietas/psicologia , Fatores de Risco , Apneia do Sono Tipo Central/epidemiologia , Apneia do Sono Tipo Central/psicologia , Ronco/epidemiologia , Ronco/psicologia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Endoscopic mucosal healing is the gold standard for evaluating Crohn's disease (CD) treatment efficacy. Standard endoscopic indices are not routinely used in clinical practice, limiting the quality of retrospective research. A method for retrospectively quantifying mucosal activity from documentation is needed. We evaluated the simplified endoscopic mucosal assessment for CD (SEMA-CD) to determine if it can accurately quantify mucosal severity recorded in colonoscopy reports. METHODS: Pediatric patients with CD underwent colonoscopy that was video recorded and evaluated via Simple Endoscopic Score for CD (SES-CD) and SEMA-CD by central readers. Corresponding colonoscopy reports were de-identified. Central readers blinded to clinical history and video scoring were randomly assigned colonoscopy reports with and without images. The SEMA-CD was scored for each report. Correlation with video SES-CD and SEMA-CD were assessed with Spearman rho, inter-rater, and intrarater reliability with kappa statistics. RESULTS: Fifty-seven colonoscopy reports were read a total of 347 times. The simplified endoscopic mucosal assessment for CD without images correlated with both SES-CD and SEMA-CD from videos (rhoâ =â 0.82, Pâ < .0001 for each). The addition of images provided similar correlation. Inter-rater and intrarater reliability were 0.93 and 0.92, respectively. CONCLUSIONS: The SEMA-CD applied to retrospective evaluation of colonoscopy reports accurately and reproducibly correlates with SES-CD and SEMA-CD of colonoscopy videos. The SEMA-CD for evaluating colonoscopy reports will enable quantifying mucosal healing in retrospective research. Having objective outcome data will enable higher-quality research to be conducted across multicenter collaboratives and in clinical registries. External validation is needed.
Assuntos
Doença de Crohn , Criança , Colonoscopia , Doença de Crohn/diagnóstico por imagem , Doença de Crohn/tratamento farmacológico , Humanos , Reprodutibilidade dos Testes , Estudos Retrospectivos , Índice de Gravidade de DoençaRESUMO
OBJECTIVE: This study presents data on the use of continuous glucose monitoring (CGM) in young children with type 1 diabetes mellitus (T1DM). CGM provides moment-to-moment tracking of glucose concentrations and measures of intra- and interday variability, which are particularly salient measures in young children with T1DM. METHODS: Thirty-one children (mean age = 5.0 yr ) with T1DM wore the Medtronic Minimed CGM for a mean of 66.8 h. The CGM was inserted in diabetes clinics, and parents were provided brief training. RESULTS: Few difficulties were experienced and families cited the acceptability of CGM. Participants' CGM data are compared with self-monitoring blood glucose (SMBG) data as well as data from older children with T1DM to illustrate differences in methodology and variability present in this population. CGM data are used to calculate glucose variability, which is found to be related to diabetes variables such as history of hypoglycemic seizures. CONCLUSIONS: CGM is an acceptable research tool for obtaining glucose data in young children with T1DM and has been used previously in older children and adults. CGM may be particularly useful in young children who often experience more glucose variability. Data obtained via CGM are richer and more detailed than traditional SMBG data and allow for analyses to link blood glucose with behavior.
Assuntos
Glicemia/metabolismo , Diabetes Mellitus Tipo 1/sangue , Monitorização Ambulatorial/métodos , Pesquisa Comportamental , Automonitorização da Glicemia/métodos , Criança , Pré-Escolar , Feminino , Hemoglobinas Glicadas/metabolismo , Humanos , Sistemas de Infusão de Insulina , MasculinoRESUMO
The need to prepare pediatric transplant recipients for the transfer to adult-centered transplant care has received increased attention. This study aimed to determine adolescent and young adult LTR and parent perceptions and attitudes about the transition process. LTR and their parents completed a survey assessing level of prior thought and interest in learning about transferring care, knowledge of the transition process, perceived importance of self-management skills, concerns about moving to the adult clinic, and responsibility for health management tasks. Responses were analyzed by age, gender, and time since transplantation. Participants included 46 LTR (mean age = 16.6 yr; range 12-21), and 31 parents. Recipients and parents reported moderate concern about transition, with leaving pediatric providers being a primary worry. LTR ≥16 yr reported greater health care responsibility and increased thought, interest, and knowledge about transition. There were significant differences between parent and LTR perceptions of health care responsibility, indicating that LTR perceive having more independence than what their parents report. Overall, results suggest that adolescent and young adult LTR and their parents perceive the importance of transitional care, but demonstrate poor knowledge of the process. There remains a need for improved transition planning for both adolescents and parents.
Assuntos
Continuidade da Assistência ao Paciente/organização & administração , Transplante de Fígado/métodos , Pais/psicologia , Adaptação Fisiológica , Adaptação Psicológica , Adolescente , Fatores Etários , Análise de Variância , Criança , Estudos Transversais , Feminino , Seguimentos , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Transplante de Fígado/psicologia , Masculino , Assistência ao Paciente/normas , Assistência ao Paciente/tendências , Qualidade de Vida , Medição de Risco , Inquéritos e Questionários , Fatores de Tempo , Resultado do Tratamento , Adulto JovemRESUMO
OBJECTIVES: Endoscopic mucosal improvement is the gold standard for assessing treatment efficacy in clinical trials of Crohn's disease. Current endoscopic indices are not routinely used in clinical practice. The lack of endoscopic information in large clinical registries limits their use for research. A quick, easy, and accurate method is needed for assessing mucosal improvement for clinicians in real-world practice. We developed and tested a novel simplified endoscopic mucosal assessment for Crohn's disease (SEMA-CD). METHODS: We developed a 5-point scale for ranking endoscopic severity of ileum and colon based on Simple Endoscopic Score for Crohn's disease (SES-CD). Central readers were trained to perform SES-CD and SEMA-CD. Pediatric patients with Crohn's disease undergoing colonoscopy were enrolled. Video recordings of colonoscopies were de-identified and randomly assigned to blinded central readers. The SES-CD and SEMA-CD were scored for each video. The SES-CD was considered the validated standard for comparison. Correlation was assessed with Spearman rho, inter- and intrarater reliability with kappa statistics. RESULTS: Fifty-seven colonoscopies were read a total of 212 times. Correlation between SEMA-CD and SES-CD was strong (rho = 0.98, P < 0.0001). Inter-rater reliability for SEMA-CD was 0.80, and intrarater reliability was 0.83. Central readers rated SEMA-CD as easier than SES-CD. CONCLUSION: The SEMA-CD accurately and reproducibly correlates with the standard SES-CD. Central readers viewed SEMA-CD as easier than SES-CD. Use of SEMA-CD in practice should enable collecting mucosal improvement information in large populations of patients. This will improve the quality of research that can be conducted in clinical registries. External validation is needed.
Assuntos
Doença de Crohn , Criança , Colo/fisiopatologia , Colonoscopia/métodos , Doença de Crohn/diagnóstico , Humanos , Reprodutibilidade dos Testes , Índice de Gravidade de DoençaRESUMO
BACKGROUND: Although perianal fistulas occur commonly in pediatric Crohn's disease (CD), evaluations of health services have been limited since no validated claims-based methods exist for identifying cases. OBJECTIVE: To develop and validate accurate case definitions for perianal fistulas among pediatric patients with CD from administrative claims. METHODS: Retrospective cohort study in which we developed and tested candidate case definitions for perianal fistula. Patients (age 5-21 years between 2005-2012) with CD enrolled in Michigan Medicaid with healthcare at University of Michigan were identified via claims. Medical records were obtained from all identified patients, whose entire records were abstracted. Medical record evidence for perianal fistula was considered the "gold standard" against which candidate case definitions were compared. The reference case definition of perianal fistula (ICD9 565.1) and candidate case definitions were evaluated. RESULTS: Of 843 patients identified via claims, 274 (33%) met CD criteria for inclusion. The true perianal fistula rate among CD patients was 18% (n = 49). The top-performing candidate case definition identified 15% (n = 42), had sensitivity of 77.6%, specificity of 98.2%, positive predictive value (PPV) 90.5%, negative predictive value (NPV) 95.3%, and area under receiver operator characteristic curve (ROC) of 0.88. In contrast, the reference case definition identified 9% (n = 26), sensitivity 51.0%, specificity 99.6%, PPV 96.2%, NPV 90.3%, and had an area under ROC of 0.75. CONCLUSIONS: We demonstrated that it is feasible to use administrative claims data to accurately identify pediatric patients with perianal fistula complications. Claims-based case definitions were found to be highly accurate through medical record review, providing a high degree of confidence for future studies where chart review is not feasible. These claims-based methods can be applied to claims data in other settings for the evaluation of health services utilization as well as to assess the comparative effectiveness of prevention and treatment strategies.
Assuntos
Doença de Crohn/complicações , Revisão da Utilização de Seguros/estatística & dados numéricos , Prontuários Médicos/estatística & dados numéricos , Fístula Retal/diagnóstico , Adolescente , Animais , Feminino , Humanos , Masculino , Fístula Retal/etiologia , Estudos RetrospectivosRESUMO
Perianal skin lesions, such as skin tags, can be an early presenting sign of Crohn's disease. Surgical intervention on these lesions may increase the risk of fistula development and lead to worse outcomes. This case series examined 8 patients who underwent surgical intervention on what appeared to be benign perianal skin lesions, only to reveal fistulas leading to the diagnosis of Crohn's disease. This patient population comprised 20% of all pediatric patients with Crohn's disease who had perianal fistula present at diagnosis. The initial type of perianal lesion varied from case to case and included skin tags, hemorrhoids, and perianal abscesses. All of the patients had other presenting features that, in retrospect, may have been attributed to Crohn's disease. None presented solely with a perianal lesion. Four patients had weight loss or growth failure. Most of the remainder had abnormal laboratory test results. These findings should raise the awareness of primary care providers that perianal lesions can be the first presenting sign of possible Crohn's disease in otherwise healthy appearing children. Such children should undergo a thorough evaluation for Crohn's disease before surgical intervention on perianal lesions because surgical procedures may be associated with worse outcomes.