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Background: In Canada, access to subspecialty surgical services for children imposes inconvenience and financial hardship on geographically remote families. The purpose of this study was to evaluate a recently implemented pediatric surgical telehealth pilot program from the family and provider perspectives. Methods: Enabled by an existing telehealth infrastructure for pediatric subspecialty medicine and mental health, a pilot telehealth program for surgical consultation was established by a single surgeon in British Columbia. Following establishment of eligibility criteria, patients from remote communities requiring new consultation or clinical follow-up were offered a telehealth alternative. At the end of the encounter, both the parent and patient (if appropriate) provided feedback via a questionnaire. Provider satisfaction was also assessed via a questionnaire. We estimated costs avoided and analyzed data on pediatric surgery consultation wait time. Results: Between September 2014 and November 2017, 80 patients were seen in 19 remote telehealth centres, 23 as new referrals and 57 in follow-up consultation. Among new referrals, the commonest diagnosis was chest wall deformity. The average travel distance avoided was 705 km, with an estimated direct cost avoidance of $585. Sixty-four families (80%) completed the questionnaire. Almost all (63 [98%]) indicated high overall satisfaction with the telehealth experience. Provider satisfaction was similarly high, in terms of both the technology user interface and clinical effectiveness. Overall pediatric surgical consultation wait times were unaffected. Conclusion: Implementation of telehealth technology in a pediatric surgical practice offered high value to patients/families and, from the provider's perspective, yielded an acceptable alternative to in-person assessment. Contexte: Au Canada, l'acces aux services chirurgicaux surspecialises pour enfants est source d'inconvenients et de difficultes financieres pour les familles vivant en region eloignee. L'objectif de cette etude etait d'evaluer le point de vue des familles et des fournisseurs de services sur un programme pilote de telesante pediatrique recemment mis en [alpha]euvre. Methodes: Ce programme pilote de consultation chirurgicale a distance a ete mis sur pied par un chirurgien de Colombie-Britannique, qui s'est servi d'une infrastructure de telesante preexistante permettant la prestation de services surspecialises de medecine et de sante mentale pour enfants. Une fois leur admissibilite etablie, les patients vivant en region eloignee et ayant besoin d'une consultation ou d'un suivi clinique se sont vu offrir des services de telesante. Apres la consultation, les parents et le patient (lorsque c'etait approprie) ont rempli un formulaire de retroaction. La satisfaction des fournisseurs de soins a ete egalement evaluee au moyen d'un questionnaire. Nous avons estime les couts evites et analyse les donnees sur le temps d'attente pour une consultation en chirurgie pediatrique. Resultats: Entre septembre 2014 et novembre 2017, 80 patients ont consulte 19 centres de telesante: 23 pour une nouvelle consultation et 57 pour un suivi. Parmi les nouveaux cas, le diagnostic le plus frequent etait une malformation de la paroi thoracique. En moyenne, 705 km de deplacements ont ete evites, ce qui represente un cout estime de 585 $. Soixante-quatre familles (80%) ont rempli le questionnaire, et presque toutes (63 [98%]) se sont dites globalement satisfaites de leur experience de telesante. La satisfaction des fournisseurs de soins etait egalement elevee, tant en ce qui a trait a l'interface utilisateur des outils technologiques qu'a l'efficacite clinique. Le programme n'a eu aucun effet sur le temps d'attente general pour une consultation en chirurgie pediatrique. Conclusion: L'utilisation de services de telesante en chirurgie pediatrique a ete d'une grande valeur pour les patients et leur famille. Du point de vue des fournisseurs de soins, elle a constitue une solution de rechange acceptable aux consultations en personne., Telehealth is the delivery of health care services across geographical barriers using information and communication technologies with the intent of improving the health outcomes of patients and their communities. (1) [...]

Clinical practice frameworks are a valuable component of clinical education, promoting informed clinical decision making based on the best available evidence and/or clinical experience. They encourage standardized intervention approaches and evaluation of practice. Based on an international project to support the development of an enhanced service system for infants and young children with neuromotor disabilities in Guangzhou, China, this article describes the processes used to develop a practice framework to guide therapists' intervention choices to encourage the gross motor abilities of infants and children (0-3 years of age) exhibiting hypotonia and gross motor delays. The goal was to provide a practice framework that aligns with contemporary interest in activity-­focused intervention approaches and that considers both a child's abilities and the influence of environmental context in the achievement of gross motor skills. The final product, the "Hypotonia Wheel," is presented. It may be useful for therapists and early intervention providers who work with infants and young children with hypotonia. The process used to design the "Hypotonia Wheel" also could be used as a template to develop intervention guidelines for other clinical conditions.

To determine the level of evidence for the effectiveness of telerehabilitation against comparison interventions in improving child- and parent-related outcomes in children and youth with developmental disabilities. A systematic approach, comprised of a comprehensive search; transparent study selection, data extraction, quality assessment by independent reviewers; and synthesis of sufficiently similar data (per diagnostic group, health profession, and overall level of evidence for each outcome) was undertaken. Fifty-five studies (29 randomized trials) were included across six diagnostic groups and ten health professions. Common telerehabilitation targets varied across diagnostic groups and included motor function, behavior, language, and parental self-efficacy. Telerehabilitation was found to be either more effective or as effective versus comparison intervention in improving 46.9% or 53.1% of outcomes, respectively. It was never found to be detrimental or less effective. Strong to moderate, limited, and insufficient levels of evidence were found for 36.5%, 24.5%, and 38.6% of the outcomes, respectively. There is sufficient evidence suggesting that telerehabilitation is a promising alternative when face-to-face care is limited. It is comparable to usual care and is more effective than no treatment. Blending in-person and telerehabilitation approaches could be beneficial for the post-pandemic future of rehabilitation in pediatric care. [ABSTRACT FROM AUTHOR]

BACKGROUND. Children with cerebral palsy frequently grow poorly. The purpose of this study was to describe observed growth patterns and their relationship to health and social participation in a representative sample of children with moderate-severe cerebral palsy. METHODS. In a 6-site, multicentered, region-based cross-sectional study, multiple sources were used to identify children with moderate or severe cerebral palsy. There were 273 children enrolled, 58% male, 71% white, with Gross Motor Function Classification System levels III (22%), IV (25%), or V (53%). Anthropometric measures included: weight, knee height, upper arm length, midupper arm muscle area, triceps skinfold, and subscapular skinfold. Intraobserver and interobserver reliability was established. Health care use (days in bed, days in hospital, and visits to doctor or emergency department) and social participation (days missed of school or of usual activities for child and family) over the preceding 4 weeks were measured by questionnaire. Growth curves were developed and z scores calculated for each of the 6 measures. Cluster analysis methodology was then used to create 3 distinct groups of subjects based on average z scores across the 6 measures chosen to provide an overview of growth. RESULTS. Gender-specific growth curves with 10th, 25th, 50th, 75th, and 90th percentiles for each of the 6 measurements were created. Cluster analyses identified 3 dusters of subjects based on their average z scores for these measures. The subjects with the best growth had fewest days of health care use and fewest days of social participation missed, and the subjects with the worst growth had the most days of health care use and most days of participation missed. CONCLUSIONS. Growth patterns in children with cerebral palsy were associated with their overall health and social participation. The role of these cerebral palsy-specific growth curves in clinical decision-making will require further study. Key Words cerebral palsy, health status, growth, growth and nutrition, growth patterns Abbreviations CP--cerebral palsy NAGCPP--North American Growth in Cerebral Palsy Project KH--knee height UAL--upper arm length SUB--subscapular skinfold thickness TRI--triceps skinfold thickness AMA--arm muscle area GMFCS--Gross Motor Function Classification System CDC--Centers for Disease Control and Prevention, GROWTH IS A fundamental and integral marker of health and well-being in children. Normal growth is an indicator of health, whereas abnormal growth may indicate illness, malnutrition, or something awry [...]

Objectives. To compare the development of secondary sexual characteristics in children with cerebral palsy (CP) of moderate to severe motor impairment to children in the general population and to relate their sexual maturation to a measure of their body fat. Methods. A multicenter, cross-sectional survey of 207 children who were 3 to 18 years of age and had CP of moderate to severe motor impairment (Gross Motor Functional Classification System [GMFCS] levels 3, 4, and 5) was conducted at 6 geographic sites; attempts were made to identify all eligible children through multiple methods and enroll them in the study. Trained research assistants performed anthropometric measurements, including subscapular skinfold thickness, determined GM-FCS level, and assessed sexual maturation by Tanner stage. Secondary sexual characteristics were compared with the general population of children using cross-sectional surveys of the American Academy of Pediatrics Pediatric Research in Office Settings network and of the National Center for Health Statistics National Health and Nutrition Examination Survey (NHANES) III. Girls were classified as having begun puberty when they were at Tanner stage 2 or greater for pubic hair and breast development and to have completed puberty when they were at Tanner stage 4 or greater for pubic hair and breast development. Boys were classified as having begun puberty when they were at Tanner stage 2 or greater for pubic hair and genital development and to have completed puberty when they were at Tanner stage 4 or greater for pubic hair and genital development. Results. The mean age (standard deviation) of subjects was 9.6 (4.6) years. Of the 207 subjects, 71% were white, 21% were black, and 8% were of other races; 59% were boys, and 41% were girls. Girls with CP (n = 84) entered puberty earlier than did boys with CP (n = 123). In contrast, girls with CP tended to complete puberty later than did boys with CP. Black boys and girls with CP (n = 43) entered puberty earlier than did white boys and girls with CP (n = 147). No difference between races was found in completion of puberty. Only for white children with CP were there a sufficient number of subjects for comparisons of sexual maturation to race-matched children in the general population, using data from the American Academy of Pediatrics Pediatric Research in Office Settings network and the NHANES III study. White girls with CP initiated pubic hair development (Tanner stage 2 or greater) earlier than in the general population, but the age of onset of breast development was similar to the general population, although the age distribution was different. A greater proportion of white girls with CP had early onset of breast development (Tanner stage 2 or greater), and a greater proportion had delayed onset of breast development than in the general population. White girls with CP completed breast development later than in the general population but not pubic hair development. For white boys ages 8 to 18 years with CP (n = 75), pubic hair and genital development both began earlier than in the general population, but genital development was completed later. The estimated median age of menarche for white girls with CP was 14.0 years, which was 1.3 years later (95% confidence interval: 0.7-2.3) than for the general population (estimated median age: 12.8 years; NHANES III). Relationships between sexual maturation and nutritional state, as assessed by subscapular skinfold thickness z score, were determined separately in white boys and in white girls with CP, between the ages of 8 and 18 years. For white girls with CP, more advanced sexual maturation was associated with more body fat, adjusting for age and GMFCS level (Spearman partial correlation: 0.41). In contrast, for white boys with CP, the opposite relationship pertained: more advanced sexual maturation was associated with less body fat (-0.29). Conclusions. The pattern of sexual maturation in children with CP of moderate to severe motor impairment differs from that of children in the general population. Puberty begins earlier but ends later in white children with CP, compared with white children in the general population. In addition, menarche occurs later in white girls with CP. More advanced sexual maturation was associated with more body fat in girls but less body fat in boys. Pediatrics 2002;110:897-902; cerebral palsy, puberty, precocious puberty, sexual maturation, secondary sexual characteristics, Tanner staging, nutritional status., Cerebral palsy (CP) is defined as a "group of nonprogressive but often changing motor impairment syndromes secondary to lesions or anomalies of the brain arising in the early stages of [...]

ABSTRACT Objective To describe parent-reported feeding dysfunction and its association with health and nutritional status in children with cerebral palsy. Design Anthropometry was measured and z scores calculated. The Child [...]

Research on Arizona's Phoenix metropolitan region shows that sites with high levels of hazardous waste production or storage are disproportionately located in or near neighborhoods comprised mostly of minority and lower income residents. Data were obtained from the 1995 Maricopa County Special Census and 1996 US Environmental Protection Agency information.

Aim: To evaluate patient engagement processes in the development of a new health coaching intervention for parents of children with suspected developmental delays. Method: A cross‐sectional mixed‐method study design was used. Researchers (n=18) and patient‐partners (n=9) were surveyed using the Public and Patient Engagement Evaluation Tool (PPEET) in areas of: (1) communication/supports for participation; (2) sharing views/perspectives; (3) impacts/influence of engagement initiative; and (4) final thoughts/satisfaction. Descriptive statistics and an inductive thematic‐based approach were used to analyse the data. Results: For both study groups, high agreement, with responses largely ranging between 'agree' to 'strongly agree', was noted on all four sections of the PPEET. Qualitative reports reflected that patient engagement was important, meaningful, and had a significant impact on the quality of the project and on the professional development of researchers in their understanding and use of patient‐oriented methodology. Patient‐partners noted challenges related to having realistic deadlines in providing feedback and a lack of a broader range of representation among members. Interpretation: The benefits and challenges of applying patient‐oriented strategies to a multicentre trial were highlighted. These will be used to enhance our engagement processes. This article is commented on by Rethorn on page 631 of this issue. Editor's Choice The current COVID‐19 pandemic has placed a disproportionate additional burden on children with disabilities and their family.1 This experience has also highlighted the crucial role of parents in delivering intervention,2 the value of coaching,3 as well as the importance of quality online resources to that effect.4 My Editor's Choice for the June issue focuses on engagement of expert partners with lived experience in developing an online coaching intervention for caregivers children with a suspected developmental problem. [ABSTRACT FROM AUTHOR]

Objetivo: Evaluar los procesos de participación de los pacientes en el desarrollo de una nueva intervención de coaching de salud para padres de niños con problemas de desarrollo emergentes. MÉTODO: Se utilizó un diseño de estudio transversal de método mixto. Los investigadores (n=18) y los padres-asesores (n=9) fueron encuestados utilizando la Herramienta de Evaluación del Compromiso Público y del Paciente (PPEET) en áreas de comunicación/apoyos para la participación, compartiendo puntos de vista/perspectivas, impactos/influencia de la iniciativa de compromiso, y pensamientos finales/satisfacción. Se utilizaron estadísticas descriptivas y resúmenes temáticos para analizar los datos.Resultados: Para ambos grupos de estudio, en las cuatro secciones de la PPEET se observó un alto grado de acuerdo, con respuestas que variaban en gran medida entre 'estoy de acuerdo' y 'estoy muy de acuerdo'. Los informes cualitativos reflejaban que la participación de los pacientes era importante, significativa y tenía un impacto significativo en la calidad del proyecto y en el desarrollo profesional de los investigadores en su comprensión y uso de la metodología orientada al paciente. Los padres-asesores señalaron los problemas relacionados con la fijación de plazos realistas para proporcionar la retroalimentación y la falta de una representación más amplia entre los miembros. INTERPRETACIÓN: Se destacaron los beneficios y desafíos de aplicar estrategias orientadas al paciente a un ensayo multicéntrico. Estos se utilizarán para mejorar nuestros procesos de participación. [ABSTRACT FROM AUTHOR]

Physical and occupational therapists play a key role in the implementation of hip surveillance for children with cerebral palsy (CP) in British Columbia, Canada. We aimed to develop and assess a knowledge translation strategy to support the implementation of a provincial hip surveillance program. Pediatric therapists were invited to participate in an anonymous survey assessing hip surveillance knowledge and learning needs. Based on these results, educational materials were developed. Two years later, one year following the launch of the hip surveillance program, the survey was repeated to assess learning, knowledge use, and barriers to enrollment. The initial survey was completed by 102 therapists; 74 therapists completed the second survey. Multifaceted educational strategies, including web-based learning, in-person education, email notifications, and print materials that targeted knowledge gaps were developed. Upon re-evaluation, knowledge increased on all questions. At follow-up, 45 therapists had enrolled a child, indicating knowledge use. Barriers to enrollment included lack of a CP diagnosis, parents or physicians not agreeing to enrollment, time requirements, and lack of space to complete the clinical exam. Targeted knowledge translation strategies were successful in meeting the educational requirements of a large group of therapists in a vast geographic area. [ABSTRACT FROM AUTHOR]

Abstract Background Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. Discussion Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks. Summary This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area.