Univ., Diss.--Göttingen, 2004.

Zugl.: Düsseldorf, Universiẗat, Diss., 2008.

Background: Specialized adult care of phenylketonuria (PKU) patients is of increasing importance. Adult outpatient clinics for inherited errors of metabolism can help to achieve this task, but experience is limited. Ten years after establishment of a coordinated transition process and specialised adult care for inherited metabolic diseases, adult PKU care was evaluated with respect to metabolic control, therapy satisfaction, life satisfaction, sociodemographic data, economical welfare as well as pregnancy outcome. Methods: All PKU patients transferred from paediatric to adult care between 2005 and 2015 were identified. A retrospective data analysis and a cross-sectional survey in a sub-cohort of 30 patients including a questionnaire for assessing quality of life (FLZm) were performed as a single-centre investigation at the metabolic department of the University Hospital Leipzig, Germany. For statistical analysis, Mann-Whitney-U-test, t-test for independent samples, ANOVA and chi square test were used as appropriate. Results: 96 PKU patients (56 females/40 males; median age 32 years, range 18–62) were included. In the last 3-year period, 81 % of the transferred patients still kept contact to the adult care centre. Metabolic control was stable over the evaluation period and dried blood phenylalanine concentrations mostly remained within the therapeutic range (median 673.0 μmol/l, range 213.0–1381.1). Sociodemographic data, economical welfare and life satisfaction data were comparable to data from the general population. However, differences could be revealed when splitting the cohort according to time of diagnosis and to management during childhood. 83 % of the PKU adults were satisfied with the transition process and current adult care. 25 completed pregnancies were supervised; three newborns, born after unplanned pregnancy, showed characteristic symptoms of maternal PKU syndrome. Conclusions: Continuous care for adult PKU patients in a specialized outpatient clinic is successful, leading to good to satisfactory metabolic control and social outcomes. Uninterrupted good metabolic treatment throughout childhood and adolescence positively influences educational, professional and economic success in later life. Further effort in specialized paediatric and adult metabolic care is needed to prevent loss of follow-up and to support the recommended life-long treatment and/or care.

Der Grundsatz „Ambulant vor stationär“ ist in vielen Altersleitbildern festgehalten und der Bundesrat fordert konsequenterweise in seiner „Strategie für eine Schweizerische Alterspolitik“ Entlastungsdienste für pflegende Angehörige. Eines der Mittel zur Entlastung sind Tagesstätten. Einerseits hat die Alzheimervereinigung errechnet, dass der Bedarf in der Schweiz bei weitem nicht gedeckt sei, andererseits sind Klagen nicht ausgelasteter Tagesstätten zu hören. Was sind die Rahmenbedingungen und Praktiken funktionierender Tagesstätten? Dieser Frage gingen Fachpersonen im Rahmen eines Benchlearning-Projektes nach. Beim ersten Treffen legten sie die Themenschwerpunkte fest, welche die Basis für einen Fragebogen waren. Mit der Befragung von 19 ausgesuchten Organisationen mit Tagesplätzen wurden deren Gegebenheiten und Praktiken erhoben und anschliessend eine Palette unterschiedlicher Ansätze in Fallstudien beschrieben. Die Teilnehmenden wählten davon drei für Besuche aus. Dieser Bericht fasst die Erkenntnisse aus der Befragung und den Besuchen zusammen.:Einleitung 1 Finanzielle Rahmenbedingungen müssen stimmen 2 Tagesplätze auf Einzugsgebiet abstimmen 3 Erfolgsvoraussetzung Transport 4 Öffnungszeiten und Nachtaufenthalte 5 Attraktive Angebote für Gäste und Angehörige 6 Gäste finden: niederschwelliges Angebot und Beziehungen zu 'Zuweisern' 7 Ort und Räumlichkeiten: Vieles ist möglich 8 Mitarbeitende mit 'Herzblut' und praktischen Fährigkeiten Zusammenfassung

No description available.

Overview of relavant satistical data sources, statistical sources on caring and informal care, surveys conducted by research institutes,census by Statistik Austria, Care needs of the elderly in Vienna, informal care and support of the elderly. (author´s abstract) / Series: Forschungsberichte des Forschungsinstituts für Altersökonomie

No description available.

Background About 9 % of all children in Germany are born preterm. Despite significant improvements of medical care, preterm infants are at a greater risk to develop short and long term health complications. Negative consequences of preterm birth include neurodevelopmental disabilities, behavioral problems or learning disorders. Most data on effects of prematurity are derived from single or multi-center studies and not population-based. Since some of the long term problems of preterm delivery are associated with a disturbed parent-child interaction originating in the neonatal period, several intervention programs became available aiming to strengthen the early parent-child relationship. However, there is insufficient knowledge regarding the psychosocial and socioeconomic impact of these interventions. Prior to introducing them into routine care, those effects have to be rigorously evaluated. The population-based cohort study EcoCare-PIn (Early comprehensive Care of Preterm Infants—effects on quality of life, childhood development, and healthcare utilization) will investigate the following primary research questions: 1) What are the short- and long-term consequences of preterm birth with regard to parental stress, parent-child relationship, childhood development, quality of life and healthcare utilization including costs? 2) Does early family-centered psychosocial care prevent the hypothesized negative consequences of preterm birth on the above mentioned outcomes? Methods/Design EcoCare-PIn examines the research questions by means of a linkage of a) pseudonymized administrative individual-level claims data from the German statutory health insurance AOK PLUS on approximately 140,000 children born between 2007 and 2013 in Saxony, and b) primary data collected from the parents/caregivers of all very low birth weight (<1,500 g; n = 1,000) and low birth weight infants (1,500 to 2,500 g; n = 5,500) and a matched sample of infants above 2,500 g birth weight (n = 10,000). Discussion In Saxony, approximately 50 % of all individuals are insured at the AOK PLUS. The linkage of patient-level administrative and primary data is a novel approach in neonatal research and probably the only way to overcome shortcomings of studies solely relying on one data source. The study results are based on an observation period of up to 8 years and will directly inform perinatal healthcare provision in Saxony and Germany as a whole.

Background About 9 % of all children in Germany are born preterm. Despite significant improvements of medical care, preterm infants are at a greater risk to develop short and long term health complications. Negative consequences of preterm birth include neurodevelopmental disabilities, behavioral problems or learning disorders. Most data on effects of prematurity are derived from single or multi-center studies and not population-based. Since some of the long term problems of preterm delivery are associated with a disturbed parent-child interaction originating in the neonatal period, several intervention programs became available aiming to strengthen the early parent-child relationship. However, there is insufficient knowledge regarding the psychosocial and socioeconomic impact of these interventions. Prior to introducing them into routine care, those effects have to be rigorously evaluated. The population-based cohort study EcoCare-PIn (Early comprehensive Care of Preterm Infants—effects on quality of life, childhood development, and healthcare utilization) will investigate the following primary research questions: 1) What are the short- and long-term consequences of preterm birth with regard to parental stress, parent-child relationship, childhood development, quality of life and healthcare utilization including costs? 2) Does early family-centered psychosocial care prevent the hypothesized negative consequences of preterm birth on the above mentioned outcomes? Methods/Design EcoCare-PIn examines the research questions by means of a linkage of a) pseudonymized administrative individual-level claims data from the German statutory health insurance AOK PLUS on approximately 140,000 children born between 2007 and 2013 in Saxony, and b) primary data collected from the parents/caregivers of all very low birth weight (<1,500 g; n = 1,000) and low birth weight infants (1,500 to 2,500 g; n = 5,500) and a matched sample of infants above 2,500 g birth weight (n = 10,000). Discussion In Saxony, approximately 50 % of all individuals are insured at the AOK PLUS. The linkage of patient-level administrative and primary data is a novel approach in neonatal research and probably the only way to overcome shortcomings of studies solely relying on one data source. The study results are based on an observation period of up to 8 years and will directly inform perinatal healthcare provision in Saxony and Germany as a whole.

Aufbauend auf dem Leistungstyp „Wohnen für schwerstverhaltensauffällige Menschen mit geistiger Behinderung (im Heim)“ gemäß Anlage 1 zum Rahmenvertrag nach § 79 Abs. 1 SGB XII hat sich in den vergangenen Jahren im Freistaat Sachsen ein differenziertes Portfolio an intensivpädagogischen Wohnangeboten (IPW) für verschiedene Zielgruppen nach § 53 SGB XII und deren besonderen Bedarfslagen entwickelt. Dabei ist festzustellen, dass die Ursachen und Ausprägungen der Verhaltensauffälligkeiten sehr vielfältig sein können und dass intensivpädagogische Wohnstätten in Einzelfällen auch an ihre Grenzen geraten. Die mit der Etablierung dieser Wohnformen verbundene Zielstellung einer befristeten Verweil-dauer der Bewohner wurde nicht erreicht.