[I'm still here - Training for the Siblings of Chronically Ill or Handicapped Children]. / Ich bin auch noch da ­ Schulung für Geschwister von chronisch kranken oder behinderten Kindern.

BACKGROUND: Siblings of chronically ill or handicapped children are exposed to increased stress as a result of their special life situation. This can lead to psychological abnormalities. International studies show that programs for siblings can reduce this risk. In Germany, there is a lack of compact educational programs for siblings. Such an offer was tested with this workshop. In the one-day group training, coping strategies were developed and disease knowledge conveyed in order to reduce fears. The parents receive parallel training. METHODS: Altogether 19 sibling workshops were held. Before and six weeks after the training, standardized questionnaires were used to record sibling distress, mental health problems, and their health-related quality of life as well as family burden. T-tests for dependent samples were used to check the changes before and after training. RESULTS: Ninety-two children (average age 9.6 years; 54% female) and their parents took part in the training. From the parents' point of view, 32.5% of the children initially had an increased risk of psychological distress because of the family situation. After the training, this was reduced to 25.3%. The mental health problems were significantly reduced, as was the overall family burden. According to the self-assessment, the quality of life of the children improved. DISCUSSION: The families seem to benefit from the compact training. The workshop was applicable for families of children with different diseases and in different settings.

[How are Effects of Patient Education Programs Influenced by Psychosocial Risk Factors in Pediatrics?] / Wie beeinflussen psychosoziale Risiken den Erfolg von Patientenschulungen in der Pädiatrie?

BACKGROUND: Modular patient education programs are effective in children with chronic conditions and their families. Little is known about the influence of socioeconomic status (SES), migration background (MB) and children's mental-health problems on the programs' effects. OBJECTIVES: Do SES, MB or mental-health problems influence the success of education programs (disease-specific knowledge, children's health-related quality of life (HRQoL) and life satisfaction and parents' condition-specific burden)? MATERIALS AND METHODS: Children with different chronic conditions and their parents participated in modular patient education programs. Before and 6 weeks after the participation SES, MB, children's mental-health problems, parents' und children's disease-specific knowledge, children's HRQoL and life satisfaction and parents' condition-specific burden were assessed by standardized questionnaires. The influence on the programs' effects of SoS, MH and mental-health problems were examined with variance and correlation analyses. RESULTS: 398 children (mean age 10.2 yrs) and their parents participated. Irrespective of SoS, MH and mental-health problems the programs were associated with improved disease-specific knowledge, children's HRQoL and life satisfaction and parents' disease-specific burden. At follow-up SoS, MH and mental-health problems were associated with reduced knowledge, reduced children's' HRQoL and life satisfaction and increased parents' disease-specific burden. CONCLUSIONS: Disadvantaged families and children with mental-health problems benefit from education programs, but have an increased need of education due to special challenges.

Transition of Patients with Esophageal Atresia to Adult Care: Results of a Transition-Specific Education Program.

Aim of the Study A history of esophageal atresia (EA) may result in chronic morbidity. The transition of patients from pediatric to adult care has been recognized as an important factor to maintain disease-specific follow-up and prevent exacerbation of chronic disease. Patient education is recognized as a necessary part of transition programs for children with chronic diseases. Structured education programs for patients with EA have not yet been developed. We aimed to evaluate the efficacy of a transition-specific educational program in adolescents with a history of EA. Methods An ethical approval was obtained. Patients with a history of EA (age 14-21 years) and their parents were invited to participate in a 2-day transition-specific educational program. Overall, 29 patients and 25 parents were recruited out of whom 10/7 were allocated to the intervention group (program) and 19/18 to the control group (no program). Subjective satisfaction (ZUF-8) and expected effects of the program on the future course of the disease, transition-specific knowledge (standardized questionnaire addressing organizational and health-related aspects of transition), health-related quality of life (DISABKIDS), and confidence for self-management (Patient Activation Measure-13) were measured with appropriate psychological instruments. Nonparametric tests were used for statistical analysis. Main Results Subjects participating were highly satisfied with the program (patients 26/32 points, parents 25/32; ZUF-8). Overall, 90% of the patients and 67% of the parents anticipated a positive effect on the future course of the disease. Patient's transition-specific knowledge was low before the program (36% correct answers). It improved by 18% after the intervention (56% correct answers; p = 0.004). It did not change in the control group (54 vs. 52%; n.s.). Parent's transition-specific knowledge did not change after the intervention (66 vs. 67% correct answers; ns). In patients, there were no detectable effects on health-related quality of life (79.7 intervention vs. 81.5 controls; DISABKIDS general score) or self-management (44.4 intervention vs. 41.4 controls; PAM-13). Conclusions We identified a deficit of transition-specific knowledge in adolescents with a history of EA. These patients benefit from a transition-specific education program. Thus, the transition to adult care may be facilitated resulting in an improved long-term care of patients with EA.

Factors Associated with Worse Lung Function in Cystic Fibrosis Patients with Persistent Staphylococcus aureus.

BACKGROUND: Staphylococcus aureus is an important pathogen in cystic fibrosis (CF). However, it is not clear which factors are associated with worse lung function in patients with persistent S. aureus airway cultures. Our main hypothesis was that patients with high S. aureus density in their respiratory specimens would more likely experience worsening of their lung disease than patients with low bacterial loads. METHODS: Therefore, we conducted an observational prospective longitudinal multi-center study and assessed the association between lung function and S. aureus bacterial density in respiratory samples, co-infection with other CF-pathogens, nasal S. aureus carriage, clinical status, antibiotic therapy, IL-6- and IgG-levels against S. aureus virulence factors. RESULTS: 195 patients from 17 centers were followed; each patient had an average of 7 visits. Data were analyzed using descriptive statistics and generalized linear mixed models. Our main hypothesis was only supported for patients providing throat specimens indicating that patients with higher density experienced a steeper lung function decline (p<0.001). Patients with exacerbations (n = 60), S. aureus small-colony variants (SCVs, n = 84) and co-infection with Stenotrophomonas maltophilia (n = 44) had worse lung function (p = 0.0068; p = 0.0011; p = 0.0103). Patients with SCVs were older (p = 0.0066) and more often treated with trimethoprim/sulfamethoxazole (p = 0.0078). IL-6 levels positively correlated with decreased lung function (p<0.001), S. aureus density in sputa (p = 0.0016), SCVs (p = 0.0209), exacerbations (p = 0.0041) and co-infections with S. maltophilia (p = 0.0195) or A. fumigatus (p = 0.0496). CONCLUSIONS: In CF-patients with chronic S. aureus cultures, independent risk factors for worse lung function are high bacterial density in throat cultures, exacerbations, elevated IL-6 levels, presence of S. aureus SCVs and co-infection with S. maltophilia. TRIAL REGISTRATION: ClinicalTrials.gov NCT00669760.

Predictors of benefit from an atopic dermatitis education programme.

BACKGROUND: Multidisciplinary, age-related, structured, group educational programmes for children with atopic dermatitis (AD) and their parents have shown positive long-term outcomes with respect to quality of life and coping behaviour of the participants. We aimed to identify predictors of favourable long-term outcome of an education measure for parents of children with AD aged 3 months to 7 years in the framework of The German Atopic Dermatitis Intervention Study (GADIS). METHODS: In an exploratory approach, the data of 274 child-parent pairs were analysed with respect to the influence of various somatic and psychological variables as possible predictors of treatment success. Changes in parents' QoL, SCORAD (Scoring Atopic Dermatitis), topical corticosteroid use and parents' knowledge about AD between baseline and 12-months' follow-up were chosen as measures of long-term treatment success (outcome). RESULTS: Psychological rather than somatic parameters were identified as predictors of treatment success. Parents who had negative treatment experiences in the past and possessed only poor coping abilities with regard to scratch control benefitted the most from the training programme. The outcome of the education measure was independent of parents' schooling, vocational level and income. CONCLUSIONS: Parents of children with AD who lack adequate coping abilities should be particularly encouraged to take part in such an education programme.

Structured education program improves the coping with atopic dermatitis in children and their parents-a multicenter, randomized controlled trial.

OBJECTIVE: The objective of this study was to prove training-specific effects in children with atopic dermatitis (AD) and their parents concerning coping with the disease after their participation in a training program. In the 1-year follow-up, the changes in the training group were compared to the changes in a waiting control group while controlling the effects of the changes in severity scores. METHODS: One hundred eighty-five children aged 8-12 years and their parents participated in the study. Complete data sets at the 1-year follow-up were available for 185 parent-child pairs (102 training group; 83 waiting control group). In addition to the severity of the AD [measured with the Scoring Atopic Dermatitis (SCORAD)], data on children's itching-scratching cognitions and coping behavior and on parents handling their affected children were used in the analysis. To study whether the intervention group experienced an additional psychological benefit, which is not due to the SCORAD values, analyses of covariance with repeated measures with standardized residual change scores of the SCORAD as covariate were calculated. RESULTS: The intervention group showed greater improvement in children's coping behavior and in parents' handling their affected children. Additional effects of the training program not due to somatic improvement could be seen in the scales of itching-scratching cognitions and in three of four scales on parents dealing with their affected children. CONCLUSION: The training program, which was tested in the German Atopic Dermatitis Intervention Study, had effects on almost all explored psychological variables. Therefore, additional psychological benefit in the training group does not only depend on the greater improvement of SCORAD values in this group.

Parental preference of prandial insulin aspart compared with preprandial human insulin in a basal-bolus scheme with NPH insulin in a 12-wk crossover study of preschool children with type 1 diabetes.

OBJECTIVES: Preprandial insulin injection in preschool children is complicated by irregular eating habits. Postprandial injection of rapid-acting insulin analogs such as insulin aspart (IAsp) offers the convenience of adjusting insulin dose to match food consumed. This trial compared safety and efficacy - including parental treatment satisfaction - of two basal-bolus regimens [IAsp plus Neutral Protein Hagedorn (NPH) insulin vs. regular human insulin (HI) plus NPH] in preschool children with type 1 diabetes. METHODS: This study is a randomized, 12-wk, crossover trial comparing IAsp and regular HI in 26 children (17 boys and 9 girls; age: 2.4-6.9 yr). Regular HI was injected 30 min before and IAsp after or shortly before meals. Treatment satisfaction was assessed by a modified version of the WHO Diabetes Treatment Satisfaction Questionnaire (DTSQ-M). RESULTS: Glycemic control for IAsp treatment was not different from that for regular HI treatment as assessed by mean postprandial blood glucose increment (IAsp vs. regular HI: 2.0 vs. 1.6 mmol/L), fructosamine (300 vs. 302 micromol/L), and hemoglobin A(1c) (HbA(1c)) (7.7 vs. 7.6%). The relative risk of hypoglycemia was not significantly different [relative risk for IAsp/regular HI (95% CI): 1.06 (0.96-1.17), p = 0.225]. Mean total daily insulin dose (0.7 U/kg) remained constant throughout the trial with both treatments. The DTSQ-M score tended to be better for IAsp and reached statistical significance regarding the parental satisfaction with continuing IAsp treatment (p < 0.05). CONCLUSION: In preschool children, a basal-bolus treatment scheme with postprandial IAsp as bolus insulin was equally effective and safe compared with preprandial regular HI, although the parents showed a preference for the IAsp treatment.

Age related, structured educational programmes for the management of atopic dermatitis in children and adolescents: multicentre, randomised controlled trial.

OBJECTIVE: To determine the effects of age related, structured educational programmes on the management of moderate to severe atopic dermatitis in childhood and adolescence. DESIGN: Multicentre, randomised controlled trial. SETTING: Seven hospitals in Germany. PARTICIPANTS: Parents of children with atopic dermatitis aged 3 months to 7 years (n = 274) and 8-12 years (n = 102), adolescents with atopic dermatitis aged 13-18 years (n = 70), and controls (n = 244, n = 83, and n = 50, respectively). INTERVENTIONS: Group sessions of standardised intervention programmes for atopic dermatitis once weekly for six weeks or no education (control group). MAIN OUTCOME MEASURES: Severity of eczema (scoring of atopic dermatitis scale), subjective severity (standardised questionnaires), and quality of life for parents of affected children aged less than 13 years, over 12 months. RESULTS: Significant improvements in severity of eczema and subjective severity were seen in all intervention groups compared with control groups (total score for severity: age 3 months to 7 years - 17.5, 95% confidence intervals - 19.6 to - 15.3 v - 12.2, - 14.3 to - 10.1; age 8-12 years - 16.0, - 20.0 to - 12.0 v - 7.8, - 11.4; - 4.3; and age 13-18 years - 19.7, - 23.7 to - 15.7 v - 5.2, - 10.5 to 0.1). Parents of affected children aged less than 7 years experienced significantly better improvement in all five quality of life subscales, whereas parents of affected children aged 8-12 years experienced significantly better improvement in three of five quality of life subscales. CONCLUSION: Age related educational programmes for the control of atopic dermatitis in children and adolescents are effective in the long term management of the disease.