What do parents want from healthcare services? Reports of parents' experiences with pediatric service delivery for their children with disabilities.

PURPOSE: Family-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare. This article describes that parents continue to report mixed experiences with healthcare services for their children, as well as their ideas about what they need and want from these services. These findings will inform the development of an up-to-date measure of Family-Centred Service called Measure of Processes of Care (MPOC 2.0). METHODS: A qualitative descriptive study was conducted with parents, using focus groups and open-ended interviews. Data were analyzed using inductive content analysis. RESULTS: Parents want care that is individualized, co-ordinated, easily accessible, and takes into account the entire family dynamic. They want service providers (SPs) to be informed and invested in their child's care, and to provide parents with practical assistance. They also want to be treated with respect, caring and empathy, and to work together with SPs on the care plan. Novel components of care not identified in the original FCS guiding principles include: responsiveness to needs and mental health; effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling. CONCLUSIONS: This article identifies components of healthcare that families find helpful and desirable.Implications for RehabilitationFamily-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare.However, parents continue to experiences aspects of care that are not family-centred.Parents of children with disabilities identified components of care that they want from healthcare services.New components of care that go beyond what was identified in the original measure of FCS (MPOC) include: effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling.

Risk Assessment and Early Mobilization Pathway Following Pediatric Tracheostomy: A Pilot Study.

OBJECTIVES/HYPOTHESIS: To confirm the standard of care pertaining to postoperative mobilization practices following initial tracheostomy, to establish face validity of novel early mobilization tools, and to conduct a safety and feasibility pilot study. STUDY DESIGN: Multi-institutional survey and prospective cohort study. METHODS: Experts at our tertiary-care children's hospital developed an Early Pediatric Mobility Pathway for tracheostomy patients utilizing a novel risk-assessment tool. Surveys were distributed to professional colleagues in similar children's hospitals to establish face validity and incorporate respondent feedback. Additional surveys were disseminated to tertiary-care children's hospitals across the country to establish the current standard of care, and a pilot study was conducted. RESULTS: Seventy-seven percent of respondents from tertiary hospitals across the country confirmed the standard of care to defer mobilization until the first trach change. Greater than 83% of the respondents used to establish face validity of the tools agreed with the clinical components and scoring structure. The safety and feasibility of early mobilization prior to initial trach change was confirmed with a pilot of 10 pediatric patients without any adverse events. CONCLUSIONS: Mobilization of pediatric patients prior to initial trach change is feasible and can be safe when risk factors are assessed by a multidisciplinary team. LEVEL OF EVIDENCE: 4 Laryngoscope, 131:E653-E658, 2021.

The panorama for children with heart disease in Colombia / El panorama de los niños con enfermedades cardiacas en Colombia

Abstract Notwithstanding the availability of human and technological resources, the care deficit in the diagnosis and treatment of patients with congenital heart diseases in Colombia is estimated at 50%. Barriers to healthcare delivery and access, both at the basic and specialized level, means that patients progress and reach advanced stages of the disease, with a direct impact on morbidity and mortality, and on the cost of care. Problems in early detection and diagnosis, poor access to specialized institutions, administrative constraints to authorize surgeries, diagnostic tests, and medical services, in addition to the lack of government recognition of national referral centers for the specialized management of these patients, compromise both the quality-of-life and the survival of patients. The purpose of this study is to highlight the current situation of patients and outline the diagnostic impact of the tools widely available in our environment for the detection of these pathologies.

Resumen En Colombia se estima un déficit de atención para el diagnóstico y tratamiento de los pacientes con cardiopatías congénitas del 50%, a pesar de contar con el equipo humano y tecnológico. Las barreras en el acceso a los servicios de salud, tanto en el nivel básico como en el especializado, hacen que los pacientes evolucionen hasta estadios avanzados, con impacto directo en la morbimortalidad y costo de atención. Los problemas en la detección y el diagnóstico temprano, la falta de acceso a centros especializados, las fallas administrativas en las autorizaciones quirúrgicas, diagnósticas y médicas, así como la falta de reconocimiento por parte del Estado de centros de referencia nacional para el manejo especializado de dichos pacientes hacen que tanto la calidad de vida como la sobrevida se encuentren comprometidas. El objetivo de este artículo es resaltar la problemática actual de los pacientes y describir el impacto diagnóstico de las herramientas ampliamente disponibles en nuestro medio para la detección de dichas enfermedades.

Validation of a Case Definition for Pediatric Brain Injury Using Administrative Data.

BACKGROUND: Health administrative data are a common population-based data source for traumatic brain injury (TBI) surveillance and research; however, before using these data for surveillance, it is important to develop a validated case definition. The objective of this study was to identify the optimal International Classification of Disease , edition 10 (ICD-10), case definition to ascertain children with TBI in emergency room (ER) or hospital administrative data. We tested multiple case definitions. METHODS: Children who visited the ER were identified from the Regional Emergency Department Information System at Alberta Children's Hospital. Secondary data were collected for children with trauma, musculoskeletal, or central nervous system complaints who visited the ER between October 5, 2005, and June 6, 2007. TBI status was determined based on chart review. Sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) were calculated for each case definition. RESULTS: Of 6639 patients, 1343 had a TBI. The best case definition was, "1 hospital or 1 ER encounter coded with an ICD-10 code for TBI in 1 year" (sensitivity 69.8% [95% confidence interval (CI), 67.3-72.2], specificity 96.7% [95% CI, 96.2-97.2], PPV 84.2% [95% CI 82.0-86.3], NPV 92.7% [95% CI, 92.0-93.3]). The nonspecific code S09.9 identified >80% of TBI cases in our study. CONCLUSIONS: The optimal ICD-10-based case definition for pediatric TBI in this study is valid and should be considered for future pediatric TBI surveillance studies. However, external validation is recommended before use in other jurisdictions, particularly because it is plausible that a larger proportion of patients in our cohort had milder injuries.

Orientación diagnóstica del dolor torácico en el niño / Diagnostic orientation of the chest pain in the child

Introducción: el dolor torácico es una molestia que siente el niño en la parte superior de la zona del tórax o pecho, que puede ser una sensación física o emocional desagradable, y diferente para cada niño.Objetivo: identificar las características del dolor torácico en el niño que dificultan el diagnóstico, y que a la vez, permitan una mejor orientación y conducta hacia esta manifestación, por parte de los médicos de asistencia en el área de salud de Guatemala.Métodos: se realizó un estudio descriptivo retrospectivo en 54 pacientes con diagnóstico de dolor torácico atendidos en el policlínico con servicios de hospitalización Roberto Escudero Díaz, y sus consultorios del área de salud de Guatemala, de 2012 a 2014.Resultados: el dolor torácico se presentó en una población infantil de 1 a 14 años, con edad media general de 12 años, y predominio del sexo masculino. Entre los factores predisponentes prevaleció el esfuerzo físico mantenido. En la mayoría de los casos el dolor torácico se presentó sin otras manifestaciones clínicas. El signo positivo al examen físico que más se destacó fue la taquicardia. Predominó la causa musculoesquelética. Entre las enfermedades cardiovasculares asociadas se encontró el prolapso de válvula mitral y la pericarditis. Los principales exámenes realizados para el diagnóstico fueron las radiografías de tórax y el electrocardiograma.Conclusiones: el dolor torácico en el niño rara vez tiene origen cardiaco, y la anamnesis -más un examen físico exhaustivo- permite llegar al diagnóstico para brindar adecuada atención a estos pacientes(AU)

Orientación diagnóstica del dolor torácico en el niño / Diagnostic orientation of the chest pain in the child

INTRODUCCIÓN: el dolor torácico es una molestia que siente el niño en la parte superior de la zona del tórax o pecho, que puede ser una sensación física o emocional desagradable, y diferente para cada niño. OBJETIVO: identificar las características del dolor torácico en el niño que dificultan el diagnóstico, y que a la vez, permitan una mejor orientación y conducta hacia esta manifestación, por parte de los médicos de asistencia en el área de salud de Guatemala. MÉTODOS: se realizó un estudio descriptivo retrospectivo en 54 pacientes con diagnóstico de dolor torácico atendidos en el policlínico con servicios de hospitalización "Roberto Escudero Díaz", y sus consultorios del área de salud de Guatemala, de 2012 a 2014. RESULTADOS: el dolor torácico se presentó en una población infantil de 1 a 14 años, con edad media general de 12 años, y predominio del sexo masculino. Entre los factores predisponentes prevaleció el esfuerzo físico mantenido. En la mayoría de los casos el dolor torácico se presentó sin otras manifestaciones clínicas. El signo positivo al examen físico que más se destacó fue la taquicardia. Predominó la causa musculoesquelética. Entre las enfermedades cardiovasculares asociadas se encontró el prolapso de válvula mitral y la pericarditis. Los principales exámenes realizados para el diagnóstico fueron las radiografías de tórax y el electrocardiograma. CONCLUSIONES: el dolor torácico en el niño rara vez tiene origen cardiaco, y la anamnesis -más un examen físico exhaustivo- permite llegar al diagnóstico para brindar adecuada atención a estos pacientes.

INTRODUCTION: chest pain is some discomfort that a child may feel at the upper part of his/her thoracic area or chest and that creates unpleasant physical or emotional sensation which is different in each child. OBJECTIVE: to identify the characteristics of the chest pain in a child that makes diagnosis difficult but at the same time, allows better orientation and behavior before this manifestation by the health professionals in the health area of Guatemala. METHODS: a retrospective descriptive study was conducted in 54 patients with chest pain diagnosis seen at the admission service of "Roberto Escudero Diaz" polyclinics and its physician's offices located in the health area of Guatemala municipality from 2012 to 2014. RESULTS: chest pain was detected in an infant population aged 1 to 14 years; with general average age of 12 years and predominance of males. Sustained physical effort was a prevalent predisposing factor. Chest pain appeared with no other clinical symptom in most of cases. On the physical examination, tachycardia was the fundamental positive sign. Muscular-skeletal causes predominated. Mitral valve prolapse and pericarditis were found to be associated cardiovascular diseases. The main tests for diagnosis were chest x-rays and electrocardiogram. CONCLUSIONS: chest pain in the child is rarely of cardiac origin, so anamnesis plus comprehensive physical exam are needed to reach adequate diagnosis and provide better care for these patients.