Abstract：
UNLABELLED:Medical care for persons with chronic diseases like cystic fibrosis (CF) is provided by multi-professional teams. We assessed the patients' perspective of care by reporting the results of two consecutive patient satisfaction surveys performed within a 2-year interval at our CF centre. The newly developed, disease-specific questionnaire for parents and adults had 104 items with up to 6 response categories each. For data analysis, responses were dichotomized into a problem score with 0 % as the ideal result. Adolescents were surveyed using a different questionnaire. Seventy-six and 89 respondents, respectively, took part in the 2009 and 2011 surveys (response rates: 72 to 84 %). In 2009, the ideal problem score of 0 % was reported for 18 and 20 % of all items in adults and parents, respectively. Thirteen items had a problem score >30 %. After the whole team had implemented quality improvement measures, the 2011 survey showed a >10 % decrease in problem scores for 11 and 21 % of items in the adults and parents groups, respectively. Adolescents also reported better experiences in 2011 than in 2009. CONCLUSION:Exploring the patients' perspectives aids to identify strengths and weaknesses and helps to provide patient-centred care, which is important for persons with chronic illness.
journal_name
Eur J Pediatrjournal_title
European journal of pediatricsauthors
Ellemunter H,Stahl K,Smrekar U,Steinkamp Gdoi
10.1007/s00431-015-2545-1subject
Has Abstractpub_date
2015-11-01 00:00:00pages
1451-60issue
11eissn
0340-6199issn
1432-1076pii
10.1007/s00431-015-2545-1journal_volume
174pub_type
杂志文章abstract：:Despite multiple recommendations, intramuscular epinephrine is poorly prescribed in emergency department receiving pediatric anaphylaxis. To evaluate the role of severity symptoms on this use, we included all admissions for a diagnosis linked to possible allergy in the two pediatric emergency departments of our instit...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/s00431-018-3246-3
更新日期：2019-01-01 00:00:00
abstract：:The factors influencing the final height of central precocious puberty patients treated with gonadotrophin releasing hormone (GnRH) analogues remain a critical issue. This study compares the predicted final height before and after GnRH analogue therapy to identify predictive factors for final height. Fourteen girls wi...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/BF01959077
更新日期：1992-10-01 00:00:00
abstract：UNLABELLED:Endocrine dysfunction and damage of the epiphysial growth plates have been reported as late effects of antileukaemic treatment during childhood. It is a common opinion that cranial irradiation (CI) is the most important factor for blunted growth. Accordingly, recent therapeutic strategies in acute lymphoblas...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/s004310050599
更新日期：1997-04-01 00:00:00
abstract：:This pre-post intervention study was conducted in Neonatal Intensive Care Units in two Chinese hospitals. The objective was to evaluate the effectiveness and safety of intracavitary electrocardiogram (IC-ECG)-guided peripherally inserted central catheter (PICC) placement and tip positioning in premature infants. A tot...
journal_title：European journal of pediatrics
pub_type： 杂志文章,多中心研究
doi：10.1007/s00431-019-03524-3
更新日期：2020-03-01 00:00:00
abstract：:In five L-thyroxine-substituted hypothyroid children with partial epilepsy serum total thyroxine (T4) and free T4 (FT4) significantly (P less than 0.01) decreased following 2 months of carbamazepine (CBZ) administration (20 mg/kg per BW per day) from mean (+/- SD) values of 12.7 +/- 1.1 micrograms/dl and 15.5 +/- 1.8 ...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/BF00441860
更新日期：1986-04-01 00:00:00
abstract：UNLABELLED:Varicella-related neurological complications usually appear after the rash. Pre-eruptive neurological complications of primary varicella zoster virus infections have been rarely described. We report on a 5.5-year-old boy who developed encephalitis 4 days before the onset of a mild vesicular skin rash and 5 d...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/s004310050942
更新日期：1998-10-01 00:00:00
abstract：UNLABELLED:We studied the clinical and biochemical factors associated with surfactant dysfunction and factors affecting the responsiveness to exogenous surfactant among 27 neonates with haemorrhagic pulmonary oedema (HPE). HPE was defined as the presence of a large amount of blood-stained lung effluent and respiratory ...
journal_title：European journal of pediatrics
pub_type： 杂志文章,多中心研究
doi：10.1007/s00431-003-1276-x
更新日期：2003-10-01 00:00:00
abstract：UNLABELLED:The need to reappraise sedation policy is dictated by newer noninvasive imaging modalities. In this study we evaluate the safety and efficacy of rectally-administered thiopental in children undergoing MRI. Eighty-three consecutive patients with congenital heart disease (mean age 2.9 years, SD 2.5) undergoing...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：
更新日期：1996-09-01 00:00:00
abstract：:A female patient with medium-chain acyl-CoA dehydrogenase (MCAD) deficiency developed normally until 13 months of age after which she showed a gradual developmental delay, followed by progressive dementia, and a decrease in head circumference growth culminating in the diagnosis of Rett syndrome at 3.5 years. ...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/BF01954516
更新日期：1994-04-01 00:00:00
abstract：UNLABELLED:Henoch-Schönlein purpura (HSP) is a small-vessel disease in children that is often accompanied by kidney damage. Despite many efforts to improve the early assessment of renal injury in HSP patients, effective markers are still lacking. In recent years, the relationship between kidney injury molecule-1 (KIM-1...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/s00431-015-2601-x
更新日期：2016-01-01 00:00:00
abstract：:In the serum of two infant sisters with a congenital renal salt-losing syndrome, Na was rather low and K considerably increased. Even with Na levels of 126 mval/1, sodium was excreted in the urine. Creatinine and hippurate clearances were normal. Primary disturbances of the steroid metabolism were not detectable; plas...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/BF00443063
更新日期：1976-01-02 00:00:00
abstract：UNLABELLED:Fibronectin (a glycoprotein which modulates inflammation) may decrease mortality in systemic infection. Children with meningococcal disease (MCD) may have low fibronectin levels. We aimed to compare plasma fibronectin levels in children with MCD and controls, correlate fibronectin levels with interleukin-6 (...
journal_title：European journal of pediatrics
pub_type： 杂志文章,多中心研究
doi：10.1007/s004310050636
更新日期：1997-06-01 00:00:00
abstract：UNLABELLED:In 135 women and 85 men who initially presented for tall stature, the outcome in treated (56 women and 33 men; cases) and untreated (controls) was investigated. At the time of height prediction, cases were significantly taller (P < or = 0.03) than the controls, they had higher target heights (P < 0.001) and ...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/s004310050740
更新日期：1997-12-01 00:00:00
abstract：PURPOSE:The study investigated the television watching habits of children in hospital compared with those at home and the factors which influence them. METHODS:A random sample of 546 school aged children hospitalized in paediatric hospitals (2) in Athens (Greece) was studied. RESULTS:Children's television watching ti...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/s00431-006-0166-4
更新日期：2006-11-01 00:00:00
abstract：:The risk factors for recurrent apparent life-threatening event (ALTE) are unclear although the risk of recurrent ALTE is an important consideration for the management of ALTE patients. This study aimed to identify the risk factors for recurrent ALTE. We conducted a secondary analysis of the data from a single center r...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/s00431-017-2855-6
更新日期：2017-04-01 00:00:00
abstract：:An autosomal dominant hereditary bone dysplasia was observed in three members of a Sardinian family living in Germany--the father and two sons. The guiding clinical symptom is thickening of the wrist proximal to the styloid process of the ulna. The radiologically recognizable changes--non-calcified cartilaginous islan...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/BF00441850
更新日期：1986-04-01 00:00:00
abstract：:The study was planned to determine identifiable starting points of a trend towards obesity and the influence of variables in preschool children aged 0 to 6 years. In this longitudinal follow-up study, 102 children were enrolled. Anthropometric measurements such as weight-height centiles (specific for gender and age gr...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/s00431-010-1343-z
更新日期：2011-06-01 00:00:00
abstract：:Primary ciliary dyskinesia (PCD) is an inherited disease related to ciliary dysfunction, with heterogeneity in clinical presentation and in ciliary ultrastructural defect. Our study intended to determine if there are phenotypic differences in patients with PCD based on ciliary ultrastructural abnormality. In this retr...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/s00431-013-1996-5
更新日期：2013-08-01 00:00:00
abstract：:The aim of the study was to identify the relationship of acquired neutropenia with childhood infections and to assess its clinical course, complications, and outcome. Children admitted to two pediatric wards over a 4-year period with febrile neutropenia were prospectively investigated for underlying infections with in...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/s00431-013-1965-z
更新日期：2013-06-01 00:00:00
abstract：:Premature newborns are particularly vulnerable to iatrogenic hypothyroidism due to iodine exposure, usually through skin absorption of iodine-containing disinfectants or intravenous administration of iodinated contrast agents. We report here a case of severe iatrogenic hypothyroidism with goiter and cholestasis, disco...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/s00431-008-0782-2
更新日期：2009-04-01 00:00:00
abstract：:Recently a novel and non-invasive technique of lower leg length measurement (knemometry) was introduced. The method estimates the distance between heel and knee in the sitting child with an accuracy of 0.09 mm(SD). Two female patients with anorexia nervosa, aged 14:4 and 13:7 years, weighing minus 27 and minus 38% of ...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/BF02467353
更新日期：1987-11-01 00:00:00
abstract：:Pseudohyperkalaemia was observed in 3 of 16 patients with Kawasaki disease showing remarkably increased platelet counts. Their plasma potassium concentration, which is not affected by in vitro coagulation, was in the normal range despite the increased serum level. A significant correlation was observed between the pla...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/BF01957752
更新日期：1992-07-01 00:00:00
abstract：UNLABELLED:Storage of human breast milk by freezing or refrigeration of milk with and without heating have been recommended. This can hardly be avoided because of the social circumstances of most mothers who are regularly separated from their infants because of work or schooling as well as the particular needs of some ...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/s004310000577
更新日期：2000-11-01 00:00:00
abstract：:Plasma fibronectin (FN) concentrations were measured by an immunonephelometric method in cord blood from 76 healthy newborns (45 full term and 31 preterm), in 181 healthy children, from 1 month-15 years old, divided by age into seven groups and in 81 control adults. FN levels in newborns were 35% of those of adults. T...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/BF00442615
更新日期：1988-01-01 00:00:00
abstract：:Piritramide is indicated for treatment of postoperative pain and analgosedation in the intensive care unit (ICU) setting. In an open prospective study the pharmacokinetics of piritramide were investigated in four groups: newborns (NB, age: 1-28 days) (n=8), infants 1 (IF1, age: 2-4 months) (n=7), infants 2 (IF2, age: ...
journal_title：European journal of pediatrics
pub_type： 临床试验,杂志文章
doi：10.1007/s00431-005-0021-z
更新日期：2006-04-01 00:00:00
abstract：UNLABELLED:Neuroleptic malignant syndrome (NMS) is a rare but serious disorder caused by antipsychotic medication including phenothiazines. For sedative purposes, increasing doses of alimemazine were administered to a 4-year-old multiple handicapped girl, with cerebral damage of the basal ganglia. She developed extra-p...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/s00431-002-0956-2
更新日期：2002-05-01 00:00:00
abstract：:Screening of neonates for inborn errors of metabolism has been carried out on a national level since 1969 in the Federal Republic of Germany. To raise the reliability of these routine investigations, we introduced an external quality control in March 1982. Every 2 months ten filter paper samples were sent to the scree...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/BF00451907
更新日期：1985-07-01 00:00:00
abstract：UNLABELLED:In patients with propionic acidaemia (PA), the increased intracellular concentration of propionyl-CoA leads to a relative abundance of odd-numbered long-chain fatty acids (OLCFAs) in body lipids. We investigated the relative amount of OLCFA in erythrocyte membrane lipids over a period of 1-8 years in five pa...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/s004310050010
更新日期：2000-01-01 00:00:00
abstract：:We report a prospective, non-blind, randomised, multicentre, parallel group, multinational investigation to compare ceftazidime to aminoglycoside based regimens as empirical treatment in 1316 cases of suspected sepsis in the newborn. In each of the 15 study centres either ceftazidime alone (CAZ) or ceftazidime + ampic...
journal_title：European journal of pediatrics
pub_type： 临床试验,杂志文章,多中心研究,随机对照试验
doi：10.1007/BF01954122
更新日期：1992-12-01 00:00:00
abstract：:A patient with a cerebro-hepato-renal syndrome was investigated. The visceral manifestations were those of the Zellweger syndrome (ZS); however, the child exhibited muscular hypertonia and survived into the 2nd year of life. Ultramicroscopically, hepatocytes were lacking peroxisomes, but, contrary to findings in one p...
journal_title：European journal of pediatrics
pub_type： 杂志文章
doi：10.1007/BF00441934
更新日期：1977-03-18 00:00:00
