RESUMEN
INTRODUCTION: Narcolepsy, characterized by excessive daytime sleepiness, is a debilitating lifelong sleep disorder for which there is no cure. Current pharmacological and nonpharmacological treatments directed toward symptom management may be suboptimal. This qualitative study explores the perspective of adolescents on therapeutic interventions for narcolepsy. METHODS: Semi-structured interviews with adolescents with narcolepsy were conducted from May to August 2019 at The Hospital for Sick Children in Toronto, Canada. Qualitative thematic analysis was utilized to generate themes emerging from the data. RESULTS: Eighteen adolescents with narcolepsy (age range = 10-17, mean age = 14.4 ± 2.0 years, 72% male) participated and 56% had cataplexy. Four prominent themes arose regarding therapeutic interventions for narcolepsy. Firstly, participants described that pharmacotherapy was moderately effective but did not fully relieve symptoms associated with narcolepsy. Secondly, while medications are the first line treatment for narcolepsy, many participants reported frustration regarding medication dependence and side effects. Thirdly, nonpharmacological strategies including scheduled sleep times and exercise were accepted and often employed. Lastly, adolescents desired more psychosocial support to address mental health sequelae of narcolepsy that were not fully managed by current treatment modalities. CONCLUSIONS: Medications were perceived as moderately effective for managing narcolepsy but almost all participants expressed concerns with taking medications due to side effects. Adolescents valued the importance of more holistic care for their narcolepsy treatment such as psychosocial support and nonpharmacological modalities. Further anticipatory guidance regarding pharmacological side effect profiles and better integration with nonpharmacological modalities are needed to improve disease control in adolescent patients.
Asunto(s)
Trastornos de Somnolencia Excesiva , Narcolepsia , Adolescente , Canadá , Niño , Ejercicio Físico , Femenino , Humanos , Masculino , Narcolepsia/diagnóstico , Narcolepsia/tratamiento farmacológico , SueñoRESUMEN
Background and Objectives: Children with medical complexity (CMC) are defined by complex, chronic multi-system disease with significant medical fragility. Limited research exists on dental care in CMC, which is an important part of oral health and overall health. Objectives of this study were to (1) determine the frequency and type of dental visits at a tertiary paediatric hospital of all CMC between 2015 and 2020 and (2) identify the factors associated with dental visits. Methods: A retrospective chart review of the electronic records of CMC who were seen at a paediatric hospital from 2015 to 2020 was completed. The number and type of dental visits, demographic and clinical information were reviewed. Poisson regression models were used to test the association between the outcome (number of dental visits) and potential factors associated with receiving dental care. Results: Four hundred and eighty-seven CMC (mean age=7.3 ± 4.6 years, 43.7% female) were included in this study. CMC were seen by dentists at the hospital 4.4 ± 3.8 times since 2015, which is approximately once per year over a 5-year period. Dental visits were mostly preventative (66.4% of all visits). CMC had more dental visits if they had dental care funding compared to no funding if they were living in a community with a population >100,000 people and if they were being followed by a greater number of sub-specialists. Conclusions: This study highlights the importance of funding, access to paediatric dental specialists, and care coordination support to improve access to dental care for CMC to optimize oral health.
RESUMEN
PURPOSE OF REVIEW: Narcolepsy is a central disorder of hypersomnolence with symptoms of excessive daytime sleepiness, sleep paralysis, and cataplexy. Cataplexy is the sudden loss of muscle tone in either the face, neck, trunk, and/or limbs, leading to a loss of voluntary muscle control. This article reviews recent research on the clinical characteristics of cataplexy. RECENT FINDINGS: Longitudinal research in adults suggests that there may be a remission of cataplectic severity after symptom stabilization. First-line treatment options for cataplexy include sodium oxybate and pitolisant, with many drugs such as AXS-12, FT218, and JZP258 under investigation. Patients with cataplexy reported greater limitations of daily activities such as driving and exercise compared to patients without cataplexy. Cataplexy remains a challenge for children and adults with narcolepsy and can interfere with daily activities. There is no cure for narcolepsy, but cataplexy can be well-managed with current and promising new treatment options on the horizon.
Asunto(s)
Cataplejía , Trastornos de Somnolencia Excesiva , Narcolepsia , Oxibato de Sodio , Adulto , Cataplejía/tratamiento farmacológico , Niño , Humanos , Narcolepsia/diagnóstico , Narcolepsia/tratamiento farmacológico , Oxibato de Sodio/uso terapéuticoRESUMEN
INTRODUCTION: Positive airway therapy (PAP) adherence rates are suboptimal among adolescents with obstructive sleep apnea (OSA) and strategies to increase PAP adherence is a clinical priority. This study evaluates if caregiver support is associated with PAP adherence rates among adolescents with OSA. METHODS: We conducted a retrospective study and evaluated PAP adherence rates among adolescents with OSA from 2012 to 2017. Adherence was measured as continuous variables: average PAP usage (minutes per night) and average PAP usage >4 hours/night (% of all nights). We evaluated if adolescents with OSA who were receiving practical caregiver support with PAP had higher adherence than adolescents with OSA without caregiver support. RESULTS: One hundred and seven adolescents with OSA (mean age=14.1±2.5 years, 64.5% male, mean BMI percentile=89.0±21.8) seen between January 2012 and August 2017 at our institution were included. In this study, 60.7% (n=65) of adolescents with OSA were receiving practical caregiver support with PAP therapy. Adolescents with OSA receiving practical caregiver support with PAP used therapy for a significantly greater duration each night compared to adolescents who were not receiving practical caregiver support (298.5±206.7 versus 211.9±187.2 minutes; P=0.02). Greater time since the initial PAP prescription was independently associated with PAP adherence. CONCLUSION: Focusing on PAP adherence early may help adolescents with OSA incorporate therapy into their nightly routine, which may improve adherence and lead to improved health outcomes in adolescents with OSA. Practical caregiver support may be an essential component of ensuring optimal PAP adherence among adolescents with OSA.
RESUMEN
Obstructive sleep apnea (OSA) is characterized by snoring, recurrent obstruction (apneas) of the upper airway which disrupts normal ventilation during sleep. In the last decade, there has been a increase in children diagnosed with persistent, severe OSA attributed to (1) the obesity epidemic as 25-60% of obese children will have obesity related OSA (2) advances in medical technology that have increased life expectancy of medically complex children (3) improved diagnostics and (4) increased awareness. Positive airway pressure (PAP) is commonly used to treat persistent, severe OSA. PAP devices deliver pressurized air via nasal or oronasal interfaces to distend the upper airway and ameliorate OSA. Although effective in treating OSA, PAP adherence is suboptimal. This review article provides an overview of (1) PAP use in pediatric OSA (2) PAP devices (3) PAP adherence, (4) strategies and interventions to improve adherence and (5) Optimizing PAP delivery during pediatric to adult transition.
Asunto(s)
Presión de las Vías Aéreas Positiva Contínua/métodos , Cooperación del Paciente , Apnea Obstructiva del Sueño/terapia , Niño , Presión de las Vías Aéreas Positiva Contínua/instrumentación , HumanosRESUMEN
BACKGROUND: Narcolepsy is a sleep disorder with no cure with onset typically during adolescence. Caring for an adolescent with a lifelong medical condition can negatively impact family structure, cohesion, relationships, and overall functioning. The primary objective of this study was to evaluate family functioning in a cohort of adolescents with narcolepsy using the PedsQL Family Impact Module. The secondary objective was to compare family functioning in adolescents with narcolepsy to adolescents with chronic pain based on published data. METHODS: This was a cross-sectional study of adolescents (aged 10 to 18 years) with narcolepsy. The narcolepsy group was recruited from The Hospital for Sick Children in Toronto, Canada. Family functioning was assessed by the PedsQL family impact module total scores, which was completed by the patient's caregiver. The PedsQL family impact module yields a total scale which encompasses parent health-related quality of life, daily activities, family relationships, communication, and worry subscales. Lower scores suggest poorer family functioning. Secondary data analyses were used to compare participants' family functioning to a cohort of adolescents with chronic pain. RESULTS: Thirty adolescents with narcolepsy participated (mean age=13.8 ± 2.2 years, 76.7% male). Family functioning was impaired in this cohort of adolescents with narcolepsy and similar to adolescents with chronic pain (64.0 ± 19.8 versus 64.7 ± 19.5; P=0.849). CONCLUSION: Family functioning is impaired in adolescents with narcolepsy. Clinical teams should assess family functioning at routine clinic visits by asking about concerns and challenges related to caring for an adolescent with narcolepsy and providing resources and support as needed.
RESUMEN
With improved survival rates after pediatric liver transplantation (LT), attention is targeting improving the health-related quality of life (HRQOL) as an outcome metric. We conducted a systematic review of the literature to examine HRQOL after pediatric LT, focusing on assessment tools and factors associated with HRQOL. A literature search was conducted through PubMed, Web of Science, Ovid, and Google Scholar for all studies matching the eligibility criteria between January 2004 and September 2016. Titles and abstracts were screened independently by 2 authors and consensus for included studies was achieved through discussion. A total of 25 (2 longitudinal, 23 cross-sectional) studies were reviewed. HRQOL in pediatric LT recipients is lower than healthy controls, but it is comparable to children with chronic diseases or other pediatric solid organ transplant recipients. Domain scores were lowest in school functioning on the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scale 4.0 and general health perception on the Child Health Questionnaire, the 2 most commonly used generic HRQOL instruments. Identified predictors of poor HRQOL include sleep disturbances, medication adherence, and older age at transplantation. Two recently validated disease-specific HRQOL tools, Pediatric Liver Transplant Quality of Life tool and the Pediatric Quality of Life Inventory 3.0 Transplant Module, have enabled enhanced representation of patient HRQOL, when used in conjugation with generic tools. Heterogeneity in study design and instruments prevented a quantitative, meta-analysis of the data. In conclusion, continued optimization of durable outcomes for this population mandates prioritization of research focusing on the gap of targeted intervention studies aimed at specific HRQOL subdomains and longitudinal studies to predict the trajectory of HRQOL over time. Liver Transplantation 23 361-374 2017 AASLD.
Asunto(s)
Fallo Hepático Agudo/cirugía , Trasplante de Hígado/efectos adversos , Evaluación del Resultado de la Atención al Paciente , Calidad de Vida , Receptores de Trasplantes , Factores de Edad , Niño , Rechazo de Injerto/prevención & control , Encuestas Epidemiológicas , Humanos , Terapia de Inmunosupresión/efectos adversos , Cooperación del Paciente , Investigación Cualitativa , Trastornos del Sueño-Vigilia/complicaciones , Resultado del TratamientoRESUMEN
BACKGROUND AND OBJECTIVES: A complex relationship exists between donor characteristics and red blood cell quality which remains partly explored. The present study aimed to determine the correlation of donor characteristics with the hemoglobin (Hb) content of leukoreduced packed red blood cells (PRBC). MATERIALS AND METHODS: This prospective cross-sectional study was conducted on 100 blood donors. A pre-donation sample was collected for hemoglobin and hematocrit estimation. Whole blood was collected in quintuple blood bags and packed red cells were prepared. Sample from each packed red cell unit was estimated for hemoglobin and hematocrit. The volume, total Hb, actual total Hb, volume and Hb lost during processing, mathematical total Hb and hematocrit of each PRBC unit was calculated using formulas. The donor characteristics were analysed for correlation with Hb content of PRBC. RESULTS: The mean age of the 100 donors enrolled in the study was 36.3 ± 9.9 years. Majority of the donors were vegetarian, non-alcoholic, non-smokers, and had a pre-donation hemoglobin level of more than 14 g/dl. The mean pre-donation Hb of the donors was 14.8 ± 1.5 g/dl. There was a strong positive correlation of donor pre-donation hemoglobin with total Hb (r = 1.000, p = 0.000), actual Hb (r = 0.518, p = 0.000) and mathematical hemoglobin (r = 0.951, p = 0.000) using the Pearson correlation test. A strong positive correlation was observed between the total and actual hemoglobin (r = 0.518, p = 0.000) of the units. There was no association of other donor characteristics with Hb content of leukoreduced PRBC. CONCLUSION: Donor pre-donation hemoglobin showed a strong positive correlation with the actual hemoglobin content of leukoreduced packed red blood cells.
Asunto(s)
Donantes de Sangre , Hemoglobinas , Humanos , Adulto , Persona de Mediana Edad , Estudios Prospectivos , Estudios Transversales , Hemoglobinas/análisis , Eritrocitos/químicaRESUMEN
OBJECTIVES: Decisions to pause all non-essential paediatric hospital activities during the initial phase of the COVID-19 pandemic may have led to significant delays, deferrals and disruptions in medical care. This study explores clinical cases where the care of children was perceived by hospital clinicians to have been negatively impacted because of the changes in healthcare delivery attributing to the restrictions placed resulting from the COVID-19 pandemic. DESIGN AND SETTING: This study used a mixed-methods approach using the following: (1) a quantitative analysis of overall descriptive hospital activity between May and August 2020, and utilisation of data during the study period was performed, and (2) a qualitative multiple-case study design with descriptive thematic analysis of clinician-reported consequences of the COVID-19 pandemic on care provided at a tertiary children's hospital. RESULTS: Hospital-level utilisation and activity patterns revealed a substantial change to hospital activity including an initial reduction in emergency department attendance by 38% and an increase in ambulatory virtual care from 4% before COVID-19 to 67% between May and August 2020. Two hundred and twelve clinicians reported a total of 116 unique cases. Themes including (1) timeliness of care, (2) disruption of patient-centred care, (3) new pressures in the provision of safe and efficient care and (4) inequity in the experience of the COVID-19 pandemic emerged, each impacting patients, their families and healthcare providers. CONCLUSION: Being aware of the breadth of the impact of the COVID-19 pandemic across all of the identified themes is important to enable the delivery of timely, safe, high-quality, family-centred paediatric care moving forward.
Asunto(s)
COVID-19 , Humanos , Niño , COVID-19/epidemiología , Pandemias , Centros de Atención Terciaria , Canadá/epidemiología , Proyectos de InvestigaciónRESUMEN
BACKGROUND AND OBJECTIVE: Approximately 73% of children with severe neurological impairment (SNI) can experience episodes of pain and irritability often of unknown origin (PIUO). Limited research exists on how these experiences of PIUO may affect parental caregivers and families. The primary objective of this study was to understand the parental caregiver experience of caring for a child with SNI who experiences persistent PIUO. METHODS: We conducted a qualitative study using semi-structured interviews to explore the experience of parental caregivers of children with SNI. Interview guide questions focused on exploring pain behaviours, the diagnostic process, pharmacological and non-pharmacological management, healthcare-team support, discussion surrounding irritability, and family impact. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed by 2 independent reviewers using thematic analysis. RESULTS: 15 parental caregivers were interviewed, with 93% being mothers and 33% being a visible minority. Interviews revealed 3 major themes: 1) Variations in Clinical Care for PIUO; 2) The Experience and Challenges of Living with PIUO); 3) Managing the Impact of PIUO on Parental Well Being. Interviews demonstrated that parent and child can be viewed as a dyad, in which the child's experience is inherently linked to the parental experience. CONCLUSION: Parental caregivers described caring for a child with persistent PIUO as physically and emotionally exhausting, and negatively impacting family quality of life. Interviews highlighted avenues of future exploration for clinical care, including both enhanced management pathways for children and supportive resources for education and coping for parents.
Asunto(s)
Padres , Calidad de Vida , Cuidadores/psicología , Niño , Femenino , Humanos , Madres/psicología , Dolor , Padres/psicología , Investigación CualitativaRESUMEN
Introduction: Decreased sleep duration and increased screen time as early as preschool age may contribute to overweight and obesity. The effects of bedtime together with nocturnal sleep duration remain unclear with a paucity of data evaluating these associations longitudinally. We aim to evaluate the independent and joint effects of sleep duration, sleep bedtime, and screen time at 3 years of age on BMI status, particularly overweight and obesity by age 5 years. Methods: Data from 2185 participants of the CHILD Cohort Study were analyzed longitudinally using generalized estimating equations (GEE). Models included changes in overweight/obesity status from 3 to 5 years of age as outcome, and nocturnal sleep duration, bedtime, and daily screen time at 3 years of age as explanatory variables. The joint effects of nocturnal sleep time and excess screen time, late bedtime on overweight/obesity were subsequently analyzed. Results: The median nocturnal sleep time at 3 and 5 years of age was 11.0 hours/night [IQR 10.5, 11.5]. A total of 14.5% children went to bed after 9PM at 3 years and 7.2% at 5 years. Median screen time was 1.0 hr/day [IQR 1.0, 2.0] at both ages. Longitudinal analyses showed that sleeping less than 10.5 hours at age 3 years was associated with 46% greater odds of overweight/obesity by age 5 years (OR 1.46, 95% CI 1.07, 2.00). The risk was higher when coupled with late bedtime after 9pm (OR 1.60, 95% CI 1.12, 2.31). Children with both short nocturnal sleep duration and excess screen time (>1hr/day) had twice the associated risk of overweight/obesity by age 5 years (OR 1.96, 95% CI 1.34, 2.88). Conclusion: Nocturnal sleep duration and screen time are modifiable risk factors in young children, which may have important implications for obesity prevention as early as infancy.
RESUMEN
BACKGROUND AND OBJECTIVES: The coronavirus disease (COVID-19) pandemic has broad implications for children and families. Particular attention has been paid to delays in accessing timely pediatric care leading to unintended morbidity. In this study, we aim to describe the broader spectrum of unintended negative consequences for pediatric patients and families due to recent health care and societal changes. METHODS: All full-time doctors, dentists, and nurse practitioners working at a tertiary care children's hospital in Canada were surveyed every 2 weeks throughout the initial phase of the COVID-19 pandemic to identify clinical cases in which they perceived a negative outcome associated with hospital or societal changes as a result of the COVID-19 pandemic. Analysis followed a qualitative case series methodology using a narrative synthesis approach to determine similarities and associated themes. RESULTS: One hundred and forty-one clinicians, representing 26 hospital divisions, reported 57 unique cases in the first 6 weeks of the study. Thematic analysis of the first 50 reported cases was used to identify 6 primary themes focusing on health care quality domains as described by the Agency for Healthcare Research and Quality (safe, effective, patient-centered, timely, efficient, and equitable care). CONCLUSIONS: In this preliminary case analysis, we describe the broad social and clinical impact of COVID-19 on hospitalized pediatric patients and their families. These themes highlight the unintended consequence on families, siblings, disease diagnosis, and hospital-based care provision. Recognition and understanding of the broad implications of the COVID-19 pandemic are necessary as we strive to deliver safe, high-quality, family-centered pediatric care in this new era.
Asunto(s)
COVID-19/epidemiología , Hospitales Pediátricos/estadística & datos numéricos , Pandemias , Canadá/epidemiología , Niño , Femenino , Humanos , Masculino , SARS-CoV-2RESUMEN
Context: Acceptance and Commitment Therapy (ACT) is an emerging treatment for improving psychological well-being. Objective: To summarize research evaluating the effects of ACT on psychological well-being in children with special health care needs (SHCN) and their parents. Data Sources: An electronic literature search was conducted in PubMed, Web of Science, Ovid/EMBASE and PsycINFO (January 2000-April 2021). Study Selection: Included were studies that assessed ACT in children with SHCN (ages 0-17y) and/or parents of children with SHCN and had a comparator group. Data Extraction: Descriptive data were synthesized and presented in a tabular format, and data on relevant outcomes (e.g., depressive symptoms, stress, avoidance and fusion) were used in the meta-analyses to explore the effectiveness of ACT (administered independently with no other psychological therapy) compared to no treatment. Results: Ten studies were identified (child (7) and parent (3)). In children with SHCN, ACT was more effective than no treatment at helping depressive symptoms (standardized mean difference [SMD] = -4.27, 95% CI: -5.20, -3.34; p < 0.001) and avoidance and fusion (SMD = -1.64, 95% CI: -3.24, -0.03; p = 0.05), but not stress. In parents of children with SHCN, ACT may help psychological inflexibility (SMD = -0.77, 95% CI: -1.07, -0.47; p < 0.01). Limitations: There was considerable statistical heterogeneity in three of the six meta-analyses. Conclusions: There is some evidence that ACT may help with depressive symptoms in children with SHCN and psychological inflexibility in their parents. Research on the efficacy of ACT for a variety of children with SHCN and their parents is especially limited, and future research is needed.
Asunto(s)
Terapia de Aceptación y Compromiso , Adolescente , Niño , Preescolar , Atención a la Salud , Humanos , Lactante , Recién NacidoRESUMEN
INTRODUCTION: Having an infant admitted to the neonatal intensive care unit (NICU) is associated with increased parental stress, anxiety and depression. Enhanced support for parents may decrease parental stress and improve subsequent parent and child outcomes. The Coached, Coordinated, Enhanced Neonatal Transition (CCENT) programme is a novel bundled intervention of psychosocial support delivered by a nurse navigator that includes Acceptance and Commitment Therapy-based coaching, care coordination and anticipatory education for parents of high-risk infants in the NICU through the first year at home. The primary objective is to evaluate the impact of the intervention on parent stress at 12 months. METHODS AND ANALYSIS: This is a multicentre pragmatic randomised controlled superiority trial with 1:1 allocation to the CCENT model versus control (standard neonatal follow-up). Parents of high-risk infants (n=236) will be recruited from seven NICUs across three Canadian provinces. Intervention participants are assigned a nurse navigator who will provide the intervention for 12 months. Outcomes are measured at baseline, 6 weeks, 4, 12 and 18 months. The primary outcome measure is the total score of the Parenting Stress Index Fourth Edition Short Form at 12 months. Secondary outcomes include parental mental health, empowerment and health-related quality of life for calculation of quality-adjusted life years (QALYs). A cost-effectiveness analysis will examine the incremental cost of CCENT versus usual care per QALY gained. Qualitative interviews will explore parent and healthcare provider experiences with the intervention. ETHICS AND DISSEMINATION: Research ethics approval was obtained from Clinical Trials Ontario, Children's Hospital of Eastern Ontario Research Ethics Board (REB), The Hospital for Sick Children REB, UBC Children's and Women's REB and McGill University Health Centre REB. Results will be shared with Canadian level III NICUs, neonatal follow-up programmes and academic forums. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov Registry (NCT03350243).
Asunto(s)
Terapia de Aceptación y Compromiso , Calidad de Vida , Niño , Femenino , Humanos , Lactante , Recién Nacido , Estudios Multicéntricos como Asunto , Ontario , Responsabilidad Parental , Padres , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
STUDY OBJECTIVES: To evaluate the association between depressive symptoms, sleep patterns (duration and quality), excessive daytime sleepiness (EDS), and physical activity (PA) in adolescents with narcolepsy. METHODS: This cross-sectional study included adolescents (ages 10-18 years) with narcolepsy attending a tertiary care facility (The Hospital for Sick Children, Toronto, Canada). Adolescents with narcolepsy completed questionnaires evaluating depressive symptoms (Children's Depression Inventory-2nd edition [CDI-2]), sleep quality (Pittsburgh Sleep Quality Index), EDS (Epworth Sleepiness Scale), and PA (Godin Leisure-Time Exercise Questionnaire). Wrist-based actigraphy was worn by adolescents for 1 week to measure total sleep time (over 24 hr) and sleep efficiency percentage. RESULTS: Thirty adolescents with narcolepsy (mean age = 13.8 ± 2.2 years, 76.7% male) participated. In this cohort of adolescents with narcolepsy, 23.3% had CDI-2 total scores in the elevated range. Greater CDI-2 total scores were associated with poor sleep quality (ρ = 0.571; p = 0.02), EDS (ρ = 0.360; p = 0.05), and lower self-reported PA levels (ρ = -0.512; p < 0.01). CONCLUSIONS: Adolescents with narcolepsy report experiencing depressive symptoms, which are associated with poor sleep quality, EDS, and low PA levels. Strategies to improve nocturnal sleep quality and symptoms of EDS as well as promoting increased PA levels in adolescents with narcolepsy may provide an opportunity to improve depressive symptoms in this population. Multidisciplinary care with mental health and sleep specialists for adolescents with narcolepsy is needed.
Asunto(s)
Depresión/diagnóstico , Trastorno Depresivo/diagnóstico , Ejercicio Físico/fisiología , Narcolepsia/fisiopatología , Sueño/fisiología , Actigrafía , Adolescente , Canadá , Niño , Estudios de Cohortes , Estudios Transversales , Femenino , Humanos , Masculino , Polisomnografía , Autoinforme , Encuestas y CuestionariosRESUMEN
OBJECTIVE: Pediatric recipients of liver transplantation (LT) often report lower Health-Related Quality of Life (HRQOL) than healthy controls when assessed on generic HRQOL measurement tools. The recent addition of the Pediatric Liver Transplant Quality of Life (PeLTQL), a novel disease-specific HRQOL instrument for pediatric LT recipients, into the clinical armamentarium of tools now routinely available to clinical care teams, provides the unique opportunity to identify disease-related challenges in children who have undergone this life-saving intervention. This study assesses HRQOL in pre-adolescent aged patients with a primary diagnosis of biliary atresia (BA) who underwent LT as an infant, using both generic and disease-specific HRQOL instruments validated for children. We also examined modifiable factors associated with HRQOL after pediatric LT. METHODS: HRQOL was the primary outcome of this study assessed using the disease-specific PeLTQL and the generic Pediatric Quality of Life Inventory 4.0 (PedsQL). Exposure variables of interest included medication status (e.g., monotherapy, dual therapy) and participation in sports. RESULTS: A total of 70 (56% female, mean age 9.89 ± 1.25 years) pediatric LT recipients (mean interval since LT was 9.0 ± 1.26 years) comprised the study cohort. LT recipients reported significantly lower PedsQL Scores relative to the general population. Immunosuppression monotherapy was associated with higher patient-reported PeLTQL Scores, and sports participation was associated with higher parent-reported PedsQL Scores. CONCLUSIONS: Pre-adolescents who underwent LT as an infant with BA, self-report low HRQOL on both disease-specific and generic HRQOL tools. Further research targeting sports participation and simplifying immunosuppression may further optimize quality of life years restored by life-saving LT.
Asunto(s)
Atresia Biliar/cirugía , Encuestas Epidemiológicas , Terapia de Inmunosupresión/psicología , Trasplante de Hígado/psicología , Calidad de Vida/legislación & jurisprudencia , Receptores de Trasplantes/psicología , Canadá , Niño , Estudios Transversales , Europa (Continente) , Femenino , Humanos , Lactante , Hígado , Masculino , Medición de Resultados Informados por el Paciente , Deportes/psicología , SupervivenciaRESUMEN
[This corrects the article DOI: 10.1155/2017/9873945.].
RESUMEN
Background. Assessment of school readiness evaluates physical, social-emotional, and neuropsychological domains essential for educational success. Cognitive testing of preschool aged children with chronic liver disease may guide more timely interventions and focused efforts by health care providers. Patients and Methods. Children with chronic cholestatic liver disease diagnosed as an infant and still with their native liver (NL) and children who received a liver transplant (LT) before age of 2 years underwent testing with a battery of well-validated pediatric psychometric measures. Results. Eighteen (13 LT, 5 NL) patients (median age of 4.45 and 4.05 years, resp.) were tested. Median Full-Scale IQ was 98 (range 102-116) for LT and 116 [(range 90-106), p = 0.35, NS] for NL subjects. LT recipients had significantly greater visual based difficulties, poorer caregiver rated daily living skills (p = 0.04), and higher levels of executive function based difficulties (e.g., inattention, inhibition). Conclusion. This pilot study highlights the risk of neuropsychological difficulties in early school age children who were under 2 years of age at time of LT. Comprehensive early school age assessment should integrate psychometric measures to identify children at greatest risk, thus allowing for proactive educational intervention.
Asunto(s)
Colestasis/psicología , Evaluación Educacional , Trasplante de Hígado , Trastornos Neurocognitivos/diagnóstico , Complicaciones Posoperatorias/psicología , Preescolar , Colestasis/complicaciones , Colestasis/cirugía , Enfermedad Crónica , Femenino , Humanos , Masculino , Trastornos Neurocognitivos/etiología , Pruebas Neuropsicológicas , Proyectos Piloto , PsicometríaRESUMEN
Field experiments were conducted during 2010-11 and 2011-12 to assess the yield losses due to Alternaria blight disease caused by Alternaria lini and A. linicola in recently released cultivars and their management with the integration of Trichoderma viride, fungicides and plant extract. Disease severity on leaves varied from 41.07% (Parvati) to 65.01% (Chambal) while bud damage per cent ranged between 23.56% (Shekhar) to 46.12% (T-397), respectively in different cultivars. Maximum yield loss of 58.44% was recorded in cultivar Neelum followed by Parvati (55.56%), Meera (55.56%) and Chambal (51.72%), respectively while minimum loss was recorded in Kiran (19.99%) and Jeevan (22.22%). Minimum mean disease severity (19.47%) with maximum disease control (69.74%) was recorded with the treatment: seed treatment (ST) with vitavax power (2 g kg(-1) seed) + 2 foliar sprays (FS) of Saaf (a mixture of carbendazim+mancozeb) 0.2% followed by ST with Trichoderma viride (4g kg(-1) seed) + 2 FS of Saaf (0.2%). Minimum bud damage (13.75%) with maximum control (60.94%) was recorded with treatment of ST with vitavax power+2 FS of propiconazole (0.2%). Maximum mean seed yield (1440 kg ha(-1)) with maximum net return (Rs. 15352/ha) and benefit cost ratio (1:11.04) was obtained with treatment ST with vitavax power + 2 FS of Neem leaf extract followed by treatment ST with vitavax power+2 FS of Saaf (1378 kg ha(-1)).
Asunto(s)
Alternaria/efectos de los fármacos , Alternariosis/prevención & control , Azadirachta , Lino/microbiología , Fungicidas Industriales/farmacología , Control Biológico de Vectores , Control de Plagas/métodos , Enfermedades de las Plantas/prevención & control , Trichoderma/fisiología , Aerosoles , Alternaria/patogenicidad , Alternariosis/microbiología , Azadirachta/química , Bencimidazoles/farmacología , Carbamatos/farmacología , Carboxina/farmacología , Lino/crecimiento & desarrollo , Maneb/farmacología , Enfermedades de las Plantas/microbiología , Extractos Vegetales/aislamiento & purificación , Extractos Vegetales/farmacología , Hojas de la Planta/crecimiento & desarrollo , Hojas de la Planta/microbiología , Polvos , Triazoles/farmacología , Zineb/farmacologíaRESUMEN
It is important to identify Developmental Coordination Disorder (DCD) early in a child's life to allow for proper and timely intervention and support, and to reduce the negative secondary consequences associated with this condition. In this study we assessed the psychometric properties (construct validity, concurrent validity, reliability and test accuracy) of the Developmental Coordination Disorder Questionnaire (DCD-Q-07) in preschool children. A community-based sample of children ages 4-6 (n=181) were screened for motor difficulties using the Movement Assessment Battery for Children (M-ABC-2). Use of the M-ABC-2 resulted in the identification of 29 children below the 15th percentile, which we classified as probable DCD. Parents of these children concurrently completed the DCD-Q-07 to report their child's motor performance. The DCD-Q-07 demonstrated high internal consistency for both the full scale (alpha=0.881) and each subscale: control during movement (alpha=0.813), fine motor and handwriting (alpha=0.869) and general coordination (alpha=0.728). Moderate correlations (r=0.47-0.63) were also seen between the subscales on the DCD-Q-07, the strongest correlation being between control during movement and general coordination (r=0.63). Based on published age and sex cut points, the DCD-Q-07 showed poor sensitivity (20.7%) but high specificity (92.1%) against the M-ABC-2. Overall agreement with the M-ABC-2 was low using ROC analysis (area under the curve=0.654). Although it is important to screen for DCD in young children, the DCD-Q-07 may not be the best choice as a screening tool for DCD in preschool children ages 4-6 due to its low test accuracy.