Patterns of paediatric end-of-life care: a chart review across different care settings in Switzerland.

BACKGROUND: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care. The aim of this study was to comprehensively describe, explore and compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland. METHODS: In this nationwide retrospective chart review study, data from paediatric patients who died in the years 2011 or 2012 due to a cardiac, neurological or oncological condition, or during the neonatal period were collected in 13 hospitals, two long-term institutions and 10 community-based healthcare service providers throughout Switzerland. RESULTS: Ninety-three (62%) of the 149 reviewed patients died in intensive care units, 78 (84%) of them following withdrawal of life-sustaining treatment. Reliance on invasive medical interventions was prevalent, and the use of medication was high, with a median count of 12 different drugs during the last week of life. Patients experienced an average number of 6.42 symptoms. The prevalence of various types of symptoms differed significantly among the four diagnostic groups. Overall, our study patients stayed in the hospital for a median of six days during their last four weeks of life. Seventy-two patients (48%) stayed at home for at least one day and only half of those received community-based healthcare. CONCLUSIONS: The study provides a wide-ranging overview of current end-of-life care practices in a real-life setting of different healthcare providers. The inclusion of patients with all major diagnoses leading to disease- and prematurity-related childhood deaths, as well as comparisons across the diagnostic groups, provides additional insight and understanding for healthcare professionals. The provision of specialised palliative and end-of-life care services in Switzerland, including the capacity of community healthcare services, need to be expanded to meet the specific needs of seriously ill children and their families.

Child Health Care in Switzerland.

We provide an overview of Swiss child health care, describe the organizational structures of primary care services and hospital care in pediatrics, and analyze such significant challenges as the decline of the number of primary care physicians in communities and the economic and regulatory pressures on hospitals. We also offer thoughts and ideas for future directions, initiatives, and innovations to ensure that each child achieves the best possible health and quality of life, which is the ultimate goal of health care professionals. New developments should be promoted from a position of strength because Swiss pediatrics is well positioned, and its future remains bright.

Expression of genes related to anti-inflammatory pathways are modified among farmers' children.

BACKGROUND: The hygiene hypothesis states that children exposed to higher loads of microbes such as farmers' children suffer less from allergies later in life. Several immunological mechanisms underpinning the hygiene hypothesis have been proposed such as a shift in T helper cell balance, T regulatory cell activity, or immune regulatory mechanisms induced by the innate immunity. OBJECTIVE: To investigate whether the proposed immunological mechanisms for the hygiene hypotheses are found in farmers' children. METHODS: We assessed gene expression levels of 64 essential markers of the innate and adaptive immunity by quantitative real-time PCR in white blood cells in 316 Swiss children of the PARSIFAL study to compare farmers' to non-farmers' expressions and to associate them to the prevalence of asthma and rhinoconjunctivitis, total and allergen-specific IgE in serum, and expression of Cε germ-line transcripts. RESULTS: We found enhanced expression of genes of the innate immunity such as IRAK-4 and RIPK1 and enhanced expression of regulatory molecules such as IL-10, TGF-ß, SOCS4, and IRAK-2 in farmers' children. Furthermore, farmers' children expressed less of the TH1 associated cytokine IFN-γ while TH2 associated transcription factor GATA3 was enhanced. No significant associations between the assessed immunological markers and allergic diseases or sensitization to allergens were observed. CONCLUSION: Farmers' children express multiple increased innate immune response and immune regulatory molecules, which may contribute to the mechanisms of action of the hygiene hypothesis.

The mutual prospective influence of child and parental post-traumatic stress symptoms in pediatric patients.

BACKGROUND: Previous studies found notable rates of post-traumatic stress symptoms (PTSS) and post-traumatic stress disorder (PTSD) in pediatric patients and their parents and suggest a significant association between child and parent PTSS. However, little is known about mutual influences between child and parental PTSS over time. This study prospectively examined the presence of PTSS and PTSD and the mutual influence of child and parental PTSS in a large sample of pediatric patients with different medical conditions. METHODS: A total of 287 children (aged 6.5-16 years) and their mothers (n = 239) and fathers (n = 221) were assessed at 5-6 weeks and 1 year after an accident or a new diagnosis of cancer or diabetes mellitus type 1 in the child. RESULTS: At the first assessment 11.1% and at the second assessment 10.2% of the children had moderate to severe PTSS. At 5-6 weeks 29.3% of mothers and 18.6% of fathers met criteria for PTSD. At 1 year the rates were 14.6% for mothers and 7.9% for fathers. There were considerable differences of PTSS among different medical diagnostic groups in children and parents. Mothers were more vulnerable than fathers. Structural equation analysis revealed that initially high PTSS in mothers and fathers were longitudinally related to poorer recovery from PTSS in the child. Cross-lagged effects from the child to the parents and from one parent to the other were not significant. CONCLUSIONS: This study highlights the long-term influence of parental PTSS on the child's recovery after trauma and calls for a family systems approach and for early interventions in the treatment of traumatized pediatric patients.

Are immigrant children admitted to intensive care at increased risk?

BACKGROUND: Racial and ethnic disparities in health care are significant predictors of the quality of health care received. Studies documenting these disparities are largely based on an adult chronic care model. There are only few reports in paediatric populations. Our objective was to evaluate the severity of illness of immigrants at admission to PICU, the proportion of immigrants in PICU compared to the general population and the quality of care they receive, in order to examine whether there are disparities in health care. METHODS: Prospectively collected data of 1009 sequential first admissions in 2007 to a multidisciplinary, 19-bed, PICU of a university children's hospital in Switzerland. The main outcome measures were expected mortality, standardised mortality ratio, proportion of immigrants in general population and in PICU. RESULTS: Children with an immigrant background are overrepresented in PICU compared with their proportion in the general population. Parents of these children are more likely to be in the lowest strata of socio-professional status than parents of Swiss children hospitalised in PICU (relative risk 9.82, 95% CI 5.16 to 18.7). However, the distribution of immigrant children and Swiss children along the strata of illness severity is equal and there is no difference in standardised mortality ratio between these two groups. CONCLUSIONS: These findings indicate that disparities may exist at a lower level of illness severity, due to many possible reasons (for example shortcomings in primary health care). However, once a child enters tertiary health care, nationality and socio-economic factors no longer influence quality of health care delivery.

Critical incidents in paediatric critical care: who is at risk?

We evaluated the characteristics of children for whom critical incidents (CIs) were reported by performing prospective collection of patient data and retrospective review of reported CIs in a multidisciplinary neonatal-paediatric intensive care unit of a tertiary care university children's hospital. A period of 1 year was analysed (January to December 2007; 1,251 admissions). CIs comprised adverse events (actual patient injury), as well as near-misses. The report form of critical incidents was web-based and reporting was voluntary, anonymous and non-punitive. The severity of all CIs was divided into minor, moderate and major. Patients with and without CIs were compared regarding the following characteristics: Paediatric Index of Mortality (PIM2), duration of mechanical ventilation, length of stay in the intensive care, admission mode (surgery, cardiopulmonary bypass, cardiac/non-cardiac unit), age and sex. There were 360 CI reports (83 per 1,000 patient days; 13% major, 26% moderate, 61% minor severity). Of these, 310 CIs could be assigned to 198 specific patients. In the univariate analysis, patient-related risk factors for CIs were higher PIM2 score (p < 0.0001), increased length of stay (p < 0.0001), mechanical ventilation (p < 0.0001), increased ventilator days (p < 0.0001), male gender (p = 0.022) and young age (p < 0.0001). Using a logistic regression model, mechanical ventilation (p < 0.0001), male gender (p = 0.034) and length of stay (p < 0.0001) continued to be associated with the occurrence of CIs. Conclusion CIs often occur in paediatric intensive care. Among the patient-related factors, male gender, mechanical ventilation, and length of stay are independently associated with CIs. Already known at admission to intensive care are male gender and, usually, requirement for mechanical ventilation. Improved knowledge of the risk factors for CIs could help to minimize their frequency and thus improve quality of care.

Built environment, parents' perception, and children's vigorous outdoor play.

OBJECTIVES: To evaluate the combined effects and relative importance of socio-cultural factors as well as parents' subjectively perceived and objectively assessed environment on time children spent vigorously playing outdoors. METHODS: Cross-sectional study conducted in Berne, Biel-Bienne, and Payerne (Switzerland) during the school year 2004/2005. Included 1345 parental questionnaires from children out of three age groups (6/7, 9/10, and 13/14 years). A total of 1081 (80%) provided a home address, which could be linked to environmental data using a geographic information system (GIS). RESULTS: GIS-derived main street density in a buffer of 100 m around the home was inversely associated with time playing outdoors in adolescents and younger children, but only in more urbanized areas. In addition and independently of GIS-based main street density, parental concern about traffic safety was associated with less time playing outdoors in primary school children. Girls, adolescents, and children from the French speaking part of the country spent less time playing outdoors. A non-Swiss nationality and having younger siblings increased time playing vigorously outdoors in adolescents. CONCLUSION: In addition to socio-cultural factors, parents' perceptions and objectively measured environmental factors were significantly associated with the time spent vigorously playing outdoors. These associations differed by age group.

Assessment of intensity, prevalence and duration of everyday activities in Swiss school children: a cross-sectional analysis of accelerometer and diary data.

BACKGROUND: Appropriately measuring habitual physical activity (PA) in children is a major challenge. Questionnaires and accelerometers are the most widely used instruments but both have well-known limitations. The aims of this study were to determine activity type/mode and to quantify intensity and duration of children's everyday PA by combining information of a time activity diary with accelerometer measurements and to assess differences by gender and age. METHODS: School children (n = 189) aged 6/7 years, 9/10 years and 13/14 years wore accelerometers during one week in winter 2004 and one in summer 2005. Simultaneously, they completed a newly developed time-activity diary during 4 days per week recording different activities performed during each 15 min interval. For each specific activity, the mean intensity (accelerometer counts/min), mean duration per day (min/d) and proportion of involved children were calculated using linear regression models. RESULTS: For the full range of activities, boys accumulated more mean counts/min than girls. Adolescents spent more time in high intensity sports activities than younger children (p < 0.001) but this increase was compensated by a reduction in time spent playing vigorously (p = 0.04). In addition, adolescents spent significantly more time in sedentary activities (p < 0.001) and accumulated less counts/min during these activities than younger children (p = 0.007). Among moderate to vigorous activities, children spent most time with vigorous play (43 min/day) and active transportation (56 min/day). CONCLUSION: The combination of accelerometers and time activity diaries provides insight into age and gender related differences in PA. This information is warranted to efficiently guide and evaluate PA promotion.

Post-traumatic stress impacts on quality of life in children after road traffic accidents: prospective study.

OBJECTIVE: There is little knowledge on health-related quality of life (HRQOL) of injured children and adolescents after road traffic accidents (RTA). Although findings in injured adults suggest that post-traumatic stress symptoms (PTSS) may be important predictors of HRQOL, this issue has never been prospectively examined in children. The aim of the present study was therefore to prospectively assess HRQOL in children after RTA and specifically examine the impact of PTSS on HRQOL. METHOD: Sixty-eight children (aged 6.5-14.5 years) were interviewed 1 month and 1 year after an RTA using the Child PTSD Reaction Index and the Toegepast Natuurwetenschappelijk Onderzoek-Academisch Ziekenhuis Leiden (TNO-AZL) Questionnaire for Children's Health-Related Quality of Life. Parents and physicians were assessed with questionnaires. RESULTS: Eleven children (16.2%) showed moderate to severe post-traumatic stress reactions at 1 month, and 12 children (17.6%) at 1 year. At 1 month, patients reported reduced motor functioning and autonomy and impairments in some parts of emotional functioning compared to a community sample. At 1 year all dimensions of HRQOL were within or above normal ranges. Multivariate analysis indicated that PTSS at 1 month significantly predicted HRQOL at 1 year. CONCLUSIONS: This prospective study provides evidence for a long-term negative influence of early PTSS on HRQOL in injured children. The return of injured children to pre-injury HRQOL may therefore not only depend on optimal medical care but also on awareness and timely interventions regarding PTSS.

Side effects of angiotensin converting enzyme inhibitor (captopril) in newborns and young infants.

AIM: To analyze the side effects of captopril, an angiotensin converting enzyme inhibitor (ACEI) in newborn and young infants. METHODS: Retrospective analysis of side effects in 43 patients with congenital heart disease after cardiac surgery treated with captopril for heart failure during a two-year period. RESULTS: Median age of the patients was 26 days (range 6-310 days), median weight 3.5 kg (range 1.9-7.9 kg). Initial median dose of captopril was 0.17 mg/kg/day (range 0.05-0.55 mg/kg/day), slowly increased over 3-33 days to a maximal median dose of 1.86 mg/kg/day (range 0.2-2.3 mg/kg/day). All patients were additionally treated with diuretics. Side effects occurred in 17 patients (renal impairment or failure in 6, low blood pressure in 8, and oxygen saturation deficit in 3) requiring cessation or interruption in seven patients with renal impairment/failure (n=4), hypotension (n=1) and aorto-pulmonary shunting with low pulmonary perfusion (n=2). The six children who developed renal impairment or failure did so following a median delay of nine days after reaching the final dose and weighed on average 500 g less than the other patients (P=0.046). All side effects were fully reversible. CONCLUSION: Side effects due to captopril were not dose-related in newborns and infants in this study. However, renal side effects occurred more often in smaller infants. Routine monitoring of infants on ACEI should include renal function tests, blood pressure and transcutaneous oxygen saturation measurements.

[Asthma and rhinitis in childhood]. / Asthma und Rhinitis beim Kind.

Bronchial asthma is the most common chronic disease in childhood with a cumulative prevalence of 7-15% in Switzerland. The diagnosis is based on clinical findings due to a lack of objective criteria especially in infants and toddlers. The common base of all asthmatics is an inflammation of the intrathoracic respiratory mucosa. In school-age children allergic mechanisms are documented in up to 80%. Asthma therapy consists of symptom relief by bronchodilators and of antiinflammatory topical steroids. Rhinitis in early childhood is mainly caused by viral infections whereas in school-age children allergic inflammation becomes the main cause. During inflammatory processes of the nose the mucosa of the sinus is affected too causing rhinosinusitis. In infants therapy is normally restricted to symptom relief. The treatment of choice in allergic rhinitis are topical steroids. Antibiotics are rarely indicated. Infants with obstructed nose are prone to severe complications because of exclusive nasal breathing in this age period. The upper and lower airways are functionally linked by different mechanisms (united air ways). Patients with rhinitis often suffer from variable bronchial airflow obstruction and (sub)clinical asthma causing the so-called rhinobronchial syndrome.

Personal and environmental factors associated with active commuting to school in Switzerland.

OBJECTIVE: To assess whether prevalence of active commuting and regular car trips to school varies across communities and language regions in Switzerland and to determine personal and environmental correlates. METHODS: During the school year 2004/2005, 1345 parental questionnaires (response rate 65%) of children attending 1st, 4th and 8th grades were completed, 1031 could be linked to a GIS environmental database. A German-speaking, a French-speaking and a bilingual study area were included. Usual mode of transportation and frequency of regular car trips to school were assessed. Associations with personal and environmental factors were evaluated with multivariate regression models. RESULTS: Seventy-eight percent of the children actively traveled to school. Twelve percent were regularly driven at least once a week by car. Major road crossings and distance were significantly related to usual mode of transportation, but not to regular car trips. Age, daycare attendance, parental safety concerns, number of cars in the household and belonging to French-speaking population were significantly associated with increased regular car trips. CONCLUSION: Objective predictors are main deciding factors for active commuting to school as main mode of transport whereas personal and lifestyle factors are important factors associated with frequency of car use. Not only objective but also differing cultural attitudes should be considered when promoting non-motorized travel.

Prediction of posttraumatic stress in fathers of children with chronic diseases or unintentional injuries: a six-months follow-up study.

BACKGROUND: While fathers were neglected for a long time in research investigating families of pediatric patients, there are now a few studies available on fathers' posttraumatic stress symptoms (PTSS) and posttraumatic stress disorder (PTSD). However, little is known about the course of PTSS and PTSD in fathers of pediatric patients. The present study aimed to compare the prevalence and course of PTSS and PTSD in fathers of children with different chronic and acute conditions and to identify factors that contribute to fathers' PTSS. METHODS: Sixty-nine fathers of children newly diagnosed with either cancer, type I diabetes mellitus, or epilepsy and 70 fathers of children suffering from an unintentional injury completed questionnaires at 4-6 weeks (Time 1) and six months (Time 2) after diagnosis or injury. RESULTS: Noticeable PTSD rates were found in fathers of children with a chronic disease (26% at Time 1 and 21% at Time 2, respectively). These rates were significantly higher than rates found in fathers of children with unintentional injuries (12% at Time 1 and 6% at Time 2, respectively). Within six months after the child's diagnosis or accident a decrease in severity of PTSS was observed in both groups. Significant predictors of PTSS at Time 2 were the father's initial level of PTSS, the child's medical condition (injuries vs. chronic diseases) and functional status, the father's use of dysfunctional coping strategies, and father's level of neuroticism. CONCLUSION: Our findings suggest that fathers with initially high PTSS levels are at greater risk to experience PTSS at follow-up, particularly fathers of children with a chronic disease. Sensitizing health care professionals to the identification of PTSS symptoms but also to indicators of neuroticism and the use of specific coping strategies early in the treatment course is essential for the planning and implementation of adequate intervention strategies.

Correlation of spirometry and symptom scores in childhood asthma and the usefulness of curvature assessment in expiratory flow-volume curves.

BACKGROUND: Spirometry, and in particular forced expiratory volume in the first second (FEV(1)), are standard tools for objective evaluation of asthma. However, FEV(1) does not correlate with symptom scores, and hence its value in the assessment of childhood asthma may be limited. Therefore, some clinicians subjectively assess the presence of curvature in the maximum expiratory flow-volume (MEFV) curves obtained from spirometry, where concave patterns are observable despite normal FEV(1) values. OBJECTIVE: To evaluate the usefulness of subjective and objective measures of the curvature in the descending phase of the MEFV curve for the assessment of asthma. METHODS: We obtained symptom scores and performed spirometry in 48 patients with asthma (21 females, mean +/- SD age 10.8 +/- 2.4 y). We measured FEV(1), the ratio of FEV(1) to forced vital capacity (FEV(1)/FVC), maximum expiratory flow at one quarter of the way, and at halfway, through the forced expiratory maneuver (MEF(25) and MEF(50), respectively), and maximum expiratory flow in the middle half of the forced expiratory maneuver (MEF(25-75)). Expiratory obstruction was ranked independently by 3 pediatric pulmonologists, by subjective assessment of the MEFV curve. In addition, the curvature of the descending limb of the MEFV curve was quantitatively estimated by introducing an "average curvature index." RESULTS: No significant correlations were found between FEV(1), MEF(50), MEF(25), and MEF(25-75,) respectively, and symptom score (r = -0.22, p = 0.14; r = -0.23, p = 0.11; r = -0.28, p = 0.057; r = -0.27, p = 0.06). A weak correlation was found for FEV(1)/FVC and symptom score (r = -0.33, p = 0.021). However, quantitatively determined average curvature index (ACI) correlated significantly better with measured symptom scores (r = 0.53, p < 0.001) and were in good agreement with the assessment of expiratory obstruction from subjective curvature assessment. CONCLUSIONS: Our general findings show that individual lung function variables do not correlate well with symptoms, whereas subjective curvature assessment is thought to be helpful. With the average curvature index we have illustrated a potential clinical usefulness of quantifying the curvatures of MEFV curves.

Child and parental personality are associated with glycaemic control in Type 1 diabetes.

AIM: Little is known about the influence of the personality of the child and the personalities of the child's parents on glycaemic control in Type 1 diabetes. Our objective was to examine the extent to which glycaemic control is associated with the child's and the parents' stable personality traits, using the Big Five personality model as the basic framework. METHODS: Participants were 64 children (aged 6-16 years) with recent-onset Type 1 diabetes and their parents. Glycaemic control (HbA(1c)) was assessed at 6 months, 1 year and 2 years after diagnosis; personality was assessed at 4-6 weeks, 6 months and 1 year after diagnosis. Associations of personality with mean HbA(1c) over 2 years were examined. RESULTS: Children with better glycaemic control had a personality pattern of high Agreeableness, high Conscientiousness and low Neuroticism. Mothers of children with better glycaemic control showed a similar personality pattern, whereas the personality of the father was only marginally related to glycaemic control. Children's Conscientiousness and mothers' Agreeableness together predicted 18% of the variability in mean HbA(1c). All associations were unchanged when we controlled for child's age. CONCLUSIONS: Glycaemic control in the child was associated with the same child and maternal personality characteristics that influence treatment adherence, health-promoting behaviours and general adjustment in adult populations. In future, studies are needed to examine attitudinal and behavioural mediators of this relationship. It is suggested that attention to the personalities of the child and the mother can help to tailor diabetes education to the individual child.

Health-related quality of life in children with newly diagnosed cancer: a one year follow-up study.

BACKGROUND: Most studies on health-related quality of life (HRQOL) in children with cancer focussed on survivors. Only few studies have evaluated patients during ongoing oncological treatment. The aim of this study was a prospective assessment of HRQOL in children during the first year after diagnosis of cancer and an examination of demographic, medical, and parental predictors of HRQOL. METHODS: Fifty-two patients (mean age: 10.9 years) were assessed 6 weeks and 1 year after diagnosis with the TNO-AZL Questionnaire for Children's Health-Related Quality of Life. Parents completed the Brief Symptom Inventory. RESULTS: Compared to a community sample, patients reported more physical complaints, reduced motor functioning and autonomy, and impaired positive emotional functioning 6 weeks after diagnosis. HRQOL significantly improved over the year. However, at 1 year, patients still showed reduced motor and emotional functioning. At 6 weeks, children with leukemia were most affected. At 1 year, patients with brain tumors complained about more physical symptoms than the other groups. Intensity of treatment and presence of medical complications mainly influenced HRQOL at 6 weeks but less at 1 year. Parental psychopathology was associated with better cognitive functioning in the child. CONCLUSION: This prospective study found several domains of HRQOL to be compromised 6 weeks and 1 year after the diagnosis of cancer. Although HRQOL significantly increased over the year, there were important differences between diagnostic groups. The findings highlight the importance of repeated evaluation of HRQOL in children undergoing cancer treatment and consideration of specific differences between diagnostic groups.

Free 3-nitrotyrosine in exhaled breath condensates of children fails as a marker for oxidative stress in stable cystic fibrosis and asthma.

3-Nitrotyrosine (3-NT) is considered as a marker of oxidative stress, which occurs during inflammation. Since 3-NT levels in exhaled breath condensate (EBC) are very low, we applied a specific and sensitive gas chromatography-negative ion chemical ionization-mass spectrometry (GC-NICI-MS) method and high performance liquid chromatography (HPLC) with electrochemical detection for the analysis of free 3-NT in EBC. A total of 42 children (aged 5-17 years) were enrolled in this study, including children with asthma (n=12), cystic fibrosis (n=12), and healthy controls (n=18). Additionally, 14 healthy non-smoking adults (aged 18-59 years) were included. An EcoScreen system was used for the collection of EBC samples. Free 3-NT levels in EBC ranged from 0.54-6.8 nM. Median (interquartile range) concentrations (nM) were similar in all groups: 1.46 (0.97-2.49) in healthy adults, 2.51 (1.22-3.51) in healthy children, 1.46 (0.88-2.02) in children with asthma, and 1.97 (1.37-2.35) in CF children, respectively (p=0.24, Kruskall-Walis test). No difference was found between the children with airway disease and age-matched healthy controls. In healthy subjects, there was no effect of age on 3-NT concentrations. HPLC analyses provided similar concentration ranges for EBC 3-NT when compared with GC-NICI-MS. Our study has clearly demonstrated that free 3-NT in EBC fails as a marker for oxidative stress in children with stable CF and asthma.

Nonpuerperal mastitis in adolescents.

Mastitis in non-lactating adolescents is rare and its cause unclear. This retrospective study summarizes 22 such episodes, in 3 of which Staphylococcus aureus was isolated. Serum prolactin levels were normal. Most patients were successfully treated with oral amoxicillin-clavulanic acid. Three patients with bilateral breast cysts had a recurrence.