Abstract Background Child and parent centeredness (CPC) are important determinants of the quality of care for children with chronic health conditions. However, little is known about the perceptions of healthcare professionals on the importance and feasibility of implementing CPC in routine care, although both might be key for the successful implementation of CPC. We therefore assessed the perceptions of healthcare professionals concerning this matter and analysed, how familiarity with the International Classification of Functioning, Disability and Health (ICF) might strengthen CPC. Methods Cross-sectional data was collected in 12 specialized interdisciplinary outpatient centres providing treatment for children with chronic health conditions in Germany. The standardized questionnaire covered (1) the importance of implementing child (CC) and (2) parent centeredness (PC) as well as (3) the feasibility of implementing CC and (4) PC in routine care (based on Arnetz et al. 2008, Patient Involvement Subscale) and (5) the prior use of the ICF. Bivariate associations were assessed with permutation tests. Results In total, 206 healthcare professionals were surveyed (response rate: 47 %). The perceived feasibility of implementing CPC fell short of their importance (p < 0,001). Moreover, CC was ranked lower than PC in terms of both importance and implementation feasibility (p < 0,001, respectively). Prior use of the ICF was associated with higher importance of CC (p < 0,001) and PC (p = 0,01). Conclusions While the importance of CPC to healthcare professionals was high, the active involvement of children and the routine implementation of CPC were perceived as challenging. Interventions to facilitate the implementation of CPC should therefore comprise hands-on implementation strategies and put a special focus on how to involve children in routine care (e.g., through special communication techniques). Including the ICF as a conceptual framework in interventions to foster CPC could be a facilitator. Key messages While child and parent centeredness are important to healthcare professionals, their implementation in routine care and the active involvement of children are challenging. Interventions to foster the implementation of child and parent centeredness should include concrete practical implementation strategies and put a special focus on the involvement of children.

Die International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) ermöglicht es, komplexe Versorgungsbedarfe von Kindern mit chronischen Erkrankungen vollumfänglich zu erfassen. Die Umsetzung der ICF-CY kann zur Stärkung der partizipativen Entscheidungsfindung und zur Verbesserung der sozialen Teilhabe dieser Patienten führen. Im Rahmen von PART-CHILD wird erstmals eine ICF-CY-basierte komplexe Versorgungsmaßnahme an 15 SPZ umgesetzt und evaluiert.

BACKGROUND:Anti-N-methyl d-aspartate receptor (NMDAR) encephalitis is a rare disorder characterized by seizures, neuropsychiatric symptoms, dyskinesia and autonomic instability.OBJECTIVE:Aim of the present study was to evaluate the seizure phenotypes and electroencephalogram (EEG) features in children with anti-NMDAR encephalitis.METHODS:Seizure types, electroclinical features and clinical characteristics of 17 children with anti-NMDAR encephalitis were analysed in a retrospective case series from nine centres in Europe.RESULTS:Nearly half (8/17) of the children presented with psychiatric symptoms, whereas in 4/17 patients seizures were the first symptom and in 5/17 both symptoms occurred at the same time. During the following course seizures were reported in 16/17 children. The first EEG detected generalized slowing in 11/17 patients, focal slowing in 3/17 and normal background activity in only 3/17 children. The extreme delta brush (EDB) pattern was detected in 9/17 (53%) patients.CONCLUSION:In addition to psychiatric symptoms, children with anti-NMDAR encephalitis often show generalized slowing in EEG with or without seizures at initial presentation. EDB is present in half of all children and is potentially a helpful tool for early detection of this immune-mediated disease.

ZusammenfassungAngesichts des sich wandelnden Krankheitsspektrums in der Pädiatrie ist eine gut organisierte pädiatrische Versorgungsforschung notwendig. Wir stellen in diesem Artikel aus entwicklungspädiatrischer Sicht ausschlaggebende, neue Endpunkte der pädiatrischen Versorgungsforschung vor, nämlich Partizipation (= soziale Teilhabe) und Bildung. Durch zwei derzeit in Deutschland laufende Validierungsstudien werden in absehbarer Zeit zwei soziokulturell adaptierte deutschsprachige Instrumente zur Messung von Partizipation zur Verfügung stehen (CASP bzw. CAPE). Eine weitere Studie wird erstmals in Deutschland die Zusammenhänge zwischen Gesundheitsstand und frühen Bildungsendpunkten am Übergang von der Kindergarten- zur Grundschulzeit darstellen. Bei der zukünftigen Evaluation von pädiatrischen Versorgungsangeboten und -strukturen muss der Fokus vermehrt darauf gelegt werden, ob Partizipation und Bildung verbessert werden. Um dies zu erreichen, wird eine intensivere Vernetzung von medizinischer Versorgung und pädagogischer Förderung im Vordergrund stehen.

53. Jahrestagung der Deutschen Gesellschaft für Epileptologie Jena, 2.–5. März 2016

Background/Purpose: After publication of the ICF-CY (WHO 2007) there has been an international discussion about the participation of children, its definition, delineation and operationalization in outcome measures in recent years. The ICF-CY is a multidimensional classification system of disease that - in enlargement of the standard diagnostic tool ICD- describes the activity opportunities and the participation of patients in compliance with contextual factors. Participation in the ICF-CY is defined as “involvement in a life situation” and follows a superordinate goal of action, which can be achieved through an activity chain. The ICF-CY covers activity and participation in nine domains. In the group of pediatricians, ICF-CY is hardly known in Germany. Although the ICF-CY is increasingly widespread in social pediatrics, early intervention, and rehabilitation. A recent review article (Adair et al 2015) has shown that participation is seldom considered as an outcome in (neuro) pediatric health services research studies. The aim of the session will be to build on the basis of the ICF-CY an internationally represented theoretical understanding of participation. Participation outcome measures will be exemplarily represented and the benefit of ICF-CY in neuro and social pediatrics will be discussed.

OBJECTIVE:Mutations in the CDKL5 gene cause an early-onset epileptic encephalopathy. To date, little is known about effective antiepileptic treatment in this disorder. METHOD:Accordingly, the aim of this retrospective study was to explore the role of different antiepileptic drugs (AEDs) and the ketogenic diet (KD) in the treatment of this rare genetic disorder. We evaluated the efficacy in 39 patients with CDKL5 mutations at 3, 6 and 12 months after the introduction of each treatment. One patient was lost to follow-up after 6 and 12 months. RESULTS:The responder rate (>50% reduction in seizure frequency) to at least one AED or KD was 69% (27/39) after 3 months, 45% (17/38) after 6 months and 24% (9/38) after 12 months. The highest rate of seizure reduction after 3 months was reported for FBM (3/3), VGB (8/25), CLB (4/17), VPA (7/34), steroids (5/26), LTG (5/23) and ZNS (2/11). Twelve patients (31%) experienced a seizure aggravation to at least one AED. Most patients showed some but only initial response to various AEDs with different modes of actions. SIGNIFICANCE:Considering both age-related and spontaneous fluctuation in seizure frequency and the unknown impact of many AEDs or KD on cognition, our data may help defining realistic treatment goals and avoiding overtreatment in patients with CDKL5 mutations. There is a strong need to develop new treatment strategies for patients with this rare mutation.

Introduction/Aim: Among many neurological examination techniques general movements (GM) analysis has turned out to be a good method for the neurological evaluation of 3 months old infants. However, valid pattern recognition of GMs in infants is rather ambitious and requires intensive training. Therefore, automatic computer-based analysis of GMs could be a great assist. With a novel computer-based approach using a magnet tracking system, we were able to identify representative movement patterns, representative of clinical GM analysis.

Introduction: Neurodevelopmental assessments during the first year are frequently performed with item sets which are composed by each individual examiner guided by own experience. We report the construction and first evaluation of a standardized infant assessment (Standardized Infant NeuroDevelopmental Assessment; SINDA), which covers the age range from 6 weeks to 12 months. It consists of the following three parts: a neuromotor scale (30 items), a developmental scale (16 items for each month), and a socioemotional scale.

Therapeutic goal setting in children with movement disorders usually has its focus on improvement of body function. Often an intensive training program for children and their parents is mandatory. Rarely an evaluation of the effect for the everyday life is performed. We present our experience with the use of a standardized and client-centered interview, the Canadian Occupational Performance Measure (COPM), for goal setting on the participation level.

Introduction: General movements (GM) analysis is used for early detection of movement disorders in high-risk preterms or newborns with complication during delivery, e.g. GM analysis predicts infantile cerebral palsy at an age of 3 months with high sensitivity and specifity. Unfortunately, the implementation in daily clinical practise has not been achieved yet. GM analysis is a video-based analysis of spontaneous movements which needs ample training. Therefore, we investigated a computer-aided approach by using an electromagnetic tracking system (ETS). In previous works we have already demonstrated that ETS is a reliable and practicable way to record GM patterns. The aim of this study was to find methods to differentiate quality of movements.

Evaluation of spontaneous infant movements is an important tool for the detection of neurological impairments. It is necessary to automatically detect movement phases which exhibit certain complex characteristics in order to quantitatively assess these movements. This article presents a method to extract segments of complex movements from multivariate kinematic tracking data. Expert knowledge is represented in a principal component model. Evaluation shows a good concordance between the segments marked by the experts and the results of the automated approach. It is further shown that normal infant movements can be discriminated from pathologic movement patterns.

Summary Objective: Evaluation of spontaneous infant movements is an important tool for the detection of neurological impairments. One important aspect of this evaluation is the observation of movements which exhibit certain complex properties. This article presents a method to automatically extract segments which contain such complex patterns in order to quantitatively assess them. Methods: Expert knowledge is represented in a principal component model which captures the term complexity as the multivariate interactions in the kinematic chains of the upper and the lower limb. A complexity score is introduced which is used to quantify the similarity of new movements to this model. It was applied to the recordings of 53 infants which were diagnosed by physicians as normal or pathologic. Results: Time segments marked as complex (from five infants) by physicians could be detected with a mean accuracy of 0.77 by the automated approach. The median of the best complexityscoresofthepathologicgroup(n = 21) is significantly lower (p = 0.001) than the median of the normal group (n = 27). Conclusion: Using the complexity score we were able to quantify movement complexity in regard of the understanding of physicians. This could be useful for clinical applications.

Quantified movement analysis is a valuable tool for the diagnosis of infant movement disorders due to neurological damages of the brain. A crucial task for this purpose is the calculation of joint positions. For the leg it is challenging to determine the knee joint center. This article compares two methods to calculate the knee joint center of infants from movement data recorded with an electromagnetic tracking system. We applied both methods to calculate the knee joint centers of the recorded movements of 20 infants at the age of 3 months. A least squares approach is shown to be favorable. Furthermore an application of the method to quantify normal and abnormal movement patterns is demonstrated. The quantification showed different movement patterns for children whose movements were diagnosed abnormal by physicians. In our future work we will analyze these movement patterns to give decision support for physicians.

Objective: The aim of this randomised controlled trial was to evaluate the effectiveness of a short, highly structured parent based language intervention group programme for 2-year-old children with specific expressive language delay (SELD, without deficits in receptive language).Methods: 61 children with SELD ( mean age 24.7 months, SD 0.9) were selected between October 2003 and February 2006 during routine developmental check-ups in general paediatric practices, using a German parent-report screening questionnaire ( adapted from the MacArthur Communicative Development Inventories). Standardised instruments were used to assess the language and non-verbal cognitive abilities of these children and of 36 other children with normal language development ( reference group; mean age 24.6 months, SD 0.8). 58 children with SELD were sequentially randomly assigned to an intervention group (n= 29) or a 12-month waiting group ( n= 29). In the intervention group, mothers participated in the 3-month Heidelberg Parent-based Language Intervention (HPLI). All children were reassessed 6 and 12 months after pretest. Assessors were blind to allocation and previous results.Results: 47 children were included in the analysis. At the age of 3 years, 75% of the children in the intervention group showed normal expressive language abilities in contrast to 44% in the waiting group. Only 8% of the children in the intervention group versus 26% in the waiting group met the criteria for specific language impairment ( t score <= 35).Conclusions: By applying the short, highly structured HPLI in children with SELD, the rate of treatment for language impairment at the age of 3 years can be significantly reduced.

Objective: Early diagnosis of cerebral palsy (CP) in infancy is an unresolved challenge. General movements (GM) analysis has a high predictive value for later CP diagnosis (Hadders-Algra et al, Dev Med Child Neurol, 1999). In order to develop a objective method for registration and evaluation spontaneous movements we started a computer-aided approach with an electromagnetic tracking system (ETS).

: Out-patient groups of hypertensives were organized in an effort to improve long-term treatment results with greater attention to general measures and to increase compliance. Under supervision of a doctor and a physiotherapist 45 patients (aged 54 +/- 10 years) with mild or moderately severe hypertension were enrolled in a sports training programme after thorough examination. At the same time they were given advice and instructions on self-measurement of blood pressure, diet, medication, general life style and relaxation techniques. In the first 20 patients (observation period of more than one year) a significant reduction in both resting (systolic of -9%) and exercise (systolic of -12%) blood pressures was noted. At the same time exercise tolerance was raised (+18%), while body-weight and total cholesterol concentrations were lowered. It was possible to reduce drug dosage in seven patients, in three more it was discontinued. Left-ventricular wall thickness fell slightly but not significantly. There were no complications. It is concluded that group therapy with sport as a vehicle and advice on general life style are satisfactory means for controlling hypertension and achieve better compliance.

The prognosis of infantile postural asymmetry (IPA) is currently unclear. This leads to a substantial uncertainty about the indication of early intervention. During a prospective 2 years follow-up the effect of early intervention on IPA was investigated using a video based scoring.

Central sleep apnea is a common respiratory pattern in healthy neonates. Nevertheless, frequent central sleep apnea associated with drops in oxygen saturation may contribute to infantile morbidity. Recently, low-dose acetazolamide was shown to reduce symptomatic central sleep apnea in adults. We treated 12 infants, median conceptional age 42 weeks (range, 40-44 weeks), with central sleep apnea. In all cases, the central apnea index was >40/h total sleeping time (apnea > or = 3 sec). The cumulative duration of drops in oxygen saturation below 90% was more than 3 min/h total sleeping time. All individuals received acetazolamide 7 mg/kg/day (orally, divided in three doses) for 11 weeks. Polysomnography was begun 10 hours before the first dose and continued for 10 hours after the third dose. Polysomnography was repeated after 6 weeks of treatment and 1 week after acetazolamide therapy was discontinued. Comparison of the respiratory patterns before and after treatment (10-hour recording after the third dose) showed a decrease in the median central apnea index from 74/h (range, 42-152/h) to 13/h (range, 6-49/h). The median of the cumulative duration of drops in oxygen saturation below 90% decreased from 3.6 min/h (range, 3.1-9.2 min/h) to 0.07 min/h (range, 0-0.5 min/h). Basal oxygen saturation increased from 95 (92-97%) to 98% (96-99%). This improvement was maintained in the final polysomnography (12 weeks after therapy was begun and 1 week after completion of the 11-week course). No adverse effects were noted. We conclude that low-dose acetazolamide treatment may be useful for the treatment of central infantile sleep apnea associated with hypoxemia.