Frequency of participation and association with functioning in adolescents born extremely preterm - Findings from a population-based cohort in northern Germany.

BACKGROUND: Outcomes after extremely preterm birth (<28 weeks gestation) have been studied intensely, and follow-up into adulthood is well-established. Following the introduction of the International Classification of Functioning, Disability and Health, participation has been recognized to be a relevant outcome in rehabilitation research. During adolescence, participation is crucial to adapting to new social roles. The aim of our study was to investigate participation in the domains Autonomy, Relationships and Community Recreation. METHODS: Participation was assessed as part of a cross-sectional, population-based study in a German federal state examining all adolescents born between January 1997 and December 1999 at under 27 weeks gestation. Of the surviving 90 adolescents, 72 (80%) were followed-up at age 14 to 17. Frequency of participation was assessed using the short form of the Questionnaire of Young People's Participation and compared to matched peers. Associations with physical, cognitive, and psychological functioning and contextual factors were examined using multivariate regression. RESULTS: Frequency of participation in Autonomy, Relationships, and Community Recreation in adolescents born extremely preterm was significantly lower than that of matched peers from the general population (p < 0,001). Lower frequency of participation in Autonomy and Relationships was associated with severe physical and cognitive impairment, and psychological problems. Fifty-seven percent of the adjusted variance in Autonomy and 31% of the adjusted variance in Relationships was explained by our regression models. CONCLUSION: Further research is warranted to investigate additional factors associated with the restricted frequency of participation of adolescents born preterm to design suitable interventions for improving participation.

Predictors of health-related quality of life in chronically ill children and adolescents over time.

OBJECTIVE: This study aims at identifying predictors of generic health-related quality of life (HRQoL) in chronically ill children and adolescents over time. The newly developed computer-adaptive test Kids-CAT was used to assess five dimensions of HRQoL. METHODS: Longitudinal data from the Kids-CAT study on children and adolescents with asthma, diabetes and juvenile arthritis (n = 248; aged 7-17 years) were assessed at three measurement points over six months. Individual growth modeling served to investigate effects of sociodemographic, disease- and health-related as well as psychosocial factors on HRQoL dimensions Physical Well-Being (WB), Psychological WB, Parent Relations, Social Support & Peers, and School WB over time. RESULTS: Besides effects of sociodemographic variables on HRQoL dimensions Social Support & Peers as well as School WB, we found that a longer duration of the disease was associated with better Physical WB. Lower scores were found for patients with juvenile arthritis compared to those with diabetes in HRQoL dimensions Physical WB and Social Support & Peers. Disease control was positively related to Physical and Psychological WB over time. Mental health problems were negatively associated with four, and subjective health complaints with all five HRQoL dimensions over time. Parental mental health was positively related to the patients' HRQoL score in Parent Relations over time. CONCLUSIONS: HRQoL as a multidimensional construct is associated with a wide range of different factors. Pediatricians should consider potential mental health problems and subjective health complaints in their patients. Finally, parental HRQoL can affect HRQoL in chronically ill children and adolescents.

["I would not even think of applying!" - Barriers to Claiming Benefits for Rehabilitation Services for Children and Adolescents from Families' Perspectives]. / "Das würde ich gar nicht erst beantragen!" ­ Barrieren der Inanspruchnahme einer Kinder- und Jugend-Rehabilitations-Maßnahme aus Sicht der Familien.

Background Medical rehabilitation is recognized as an effective health care service to promote and protect health and social participation of children and adolescents. Although the number of children and adolescents with chronic conditions is growing, applications for rehabilitation have declined substantially since 2008. The aim of the study is to identify barriers that prevent families from claiming benefits for rehabilitation services and to give recommendations for actions. Methods In this explorative study, guided qualitative interviews with families with children and adolescents eligible for benefits were conducted. The analysis of the transcribed interviews followed the iterative process of content analysis (deductive and inductive development of main and sub-categories). Results 14 families (with 16 index-children) participated in the study. The results showed high levels of psychosocial burden of families and yet barriers to access services on a structural, disease-specific, and individual level. We identified three main topics in which families recommended modifications: (a) information policy, (b) family centeredness perspectives and flexibility, and (c) cross-sectoral collaboration/health care management. Conclusions Results indicate that families perceive the current pediatric rehabilitation services to lack fitting and flexibility. In general, a new approach of information and counselling, a more family centered perspective and integration of rehabilitation services in a comprehensive and coordinated health care structure are needed.

[Conception and Measurement of Health-related Transition Competence for Adolescents with Chronic Conditions - Development and Testing of a Self-Report Instrument]. / Konzeption und Erfassung der gesundheitsbezogenen Transitionskompetenz von Jugendlichen mit chronischen Erkrankungen ­ Entwicklung und Prüfung eines Selbstbeurteilungsinstrumentes.

Background: The importance of health-related care and self-management responsibilities has been shown in recent research. The aim of this work is the development and psychometric testing of an instrument to assess health-related transition competence. Methods: The instrument was developed with psychometric and conceptual methods in several steps. Based on focus group and expert interviews, an item pool to assess health-related transition competence was developed. The instrument was tested and finalised in a pilot study with adolescents with chronic conditions (N=323). Results: Three subscales "work-related preparedness" (3 items), "condition-related knowledge" (3 items) and "health-care competence" (4 items) with proper psychometric properties were identified. The subscales can be combined to a global score. Conclusions: The scales feature good psychometrics. They efficiently facilitate the standardised assessment of health-related transition competence in preparation and progress of the transition. This also enables for outcome assessment of health-care services related to transition competence (e. g., workshops).

[Utilization of Physiotherapy Services by Children and Adolescents - Results of the KiGGS- Baseline Survey]. / Inanspruchnahme von Physiotherapie im Kindes- und Jugendalter ­ Ergebnisse aus der KiGGS-Basiserhebung.

Aim of the study: The use of physical therapy in German children and adolescents has so far solely been analyzed on the basis of health insurance data, which can neither consider case history nor social factors. Using the KiGGS-baseline survey it is possible to examine the use of physical therapy on the basis of parental reported health problems and social factors. Methodology: Identifiable determinants for the use of physical therapy in the last 12 months in the KiGGS-baseline survey were examined bivariate and multivariate in logistic regression models with mutual adjustment. The following determinants were considered: social factors, somatic disorders and psychological abnormalities. The proportion of the use of physical therapy, which can be explained by these determinants, was estimated using population-attributable risk fraction. Results: The frequency of the use of physical therapy in the last 12 months in the 0 to 17-year-olds in the KiGGS-baseline survey was 6,4% with higher use during infancy and adolescence. The socio-economic status of parents was not associated with the use of physical therapy. A migration background decreased the probability of the use of physical therapy, for example, among children aged 0 to 2 years (ORadjusted: 0,5 [95% CI: 0,2-1,0]). In those with scoliosis, the use of physical therapy was almost twice as frequent in infancy as in adolescence (58,4 vs. 34,4%). A maximum of 15% of all children and adolescents with back pain reported the use of physical therapy. When ADHD was diagnosed at preschool age, the probability of using physical therapy was increased (ORadjusted: 5,1 [95% CI: 1,4-18,6]). The health problems, which were assessed in the KiGGS-baseline survey and considered for this analysis could explain 37% of the use of physical therapy in the 0 to 2-year-olds. In the other age groups, 59 to 62% could be explained. Conclusion: Comparison of the KiGGS-baseline survey with health insurance data shows similar frequencies and patterns of the use of physical therapy and can therefore be used for the analysis of healthcare questions on the use of physical therapy. The data point to potential deficits in treatment in population segments and for some conditions. An examination of these hypotheses based on analyses of health insurance data seems to be reasonable.

The validation of a computer-adaptive test (CAT) for assessing health-related quality of life in children and adolescents in a clinical sample: study design, methods and first results of the Kids-CAT study.

PURPOSE: Recently, we developed a computer-adaptive test (CAT) for assessing health-related quality of life (HRQoL) in children and adolescents: the Kids-CAT. It measures five generic HRQoL dimensions. The aims of this article were (1) to present the study design and (2) to investigate its psychometric properties in a clinical setting. METHODS: The Kids-CAT study is a longitudinal prospective study with eight measurements over one year at two University Medical Centers in Germany. For validating the Kids-CAT, 270 consecutive 7- to 17-year-old patients with asthma (n = 52), diabetes (n = 182) or juvenile arthritis (n = 36) answered well-established HRQoL instruments (Pediatric Quality of Life Inventory™ (PedsQL), KIDSCREEN-27) and scales measuring related constructs (e.g., social support, self-efficacy). Measurement precision, test-retest reliability, convergent and discriminant validity were investigated. RESULTS: The mean standard error of measurement ranged between .38 and .49 for the five dimensions, which equals a reliability between .86 and .76, respectively. The Kids-CAT measured most reliably in the lower HRQoL range. Convergent validity was supported by moderate to high correlations of the Kids-CAT dimensions with corresponding PedsQL dimensions ranging between .52 and .72. A lower correlation was found between the social dimensions of both instruments. Discriminant validity was confirmed by lower correlations with non-corresponding subscales of the PedsQL. CONCLUSIONS: The Kids-CAT measures pediatric HRQoL reliably, particularly in lower areas of HRQoL. Its test-retest reliability should be re-investigated in future studies. The validity of the instrument was demonstrated. Overall, results suggest that the Kids-CAT is a promising candidate for detecting psychosocial needs in chronically ill children.

[Utilization of Occupational Therapy in Children - Results from the KiGGS Basis Survey]. / Inanspruchnahme von Ergotherapie im Kindesalter - Ergebnisse aus der KiGGS-Basiserhebung.

BACKGROUND: A population-based analysis on use of occupational therapy by child's parentally reported health restrictions and socio-demographic determinants is missing. PATIENTS AND METHODS: The basis KiGGS survey (2003 to 2006) reports on health in 17 641 children aged 0 to 17 years. The use of occupational therapy in the last 12 months could be ticked as other therapies with a free text field to name occupational therapy or others. Health restrictions potentially relevant for the use of occupational therapy and sociodemographic factors were assessed. The proportion of use of occupational therapy explained by the health restrictions was estimated by the population attributable risk fraction. RESULTS: The average use of occupational therapy for 3 to 13-year-olds was 2.4%. There was no association with the socioeconomic status; Children with immigration background used occupational therapy less often (e. g. age group 3 to 6 years: ORadjusted 0.2 [95-% KI: 0.1-1.0]). The proportion of occupational therapy explainable by the health restrictions considered ranged from 45% (3 to 6 years) to 65% (11 to 13 years). DISCUSSION: The lower use of occupational therapy in the KiGGS survey compared to health insurance reports may be explained by the ascertainment method. A lower use of occupational therapy related to immigration background matches lower use for physician visits. CONCLUSION: The causes for the low proportion of explained occupational therapy in young children and the lower use in children with immigration background warrant further research.

Implementation of the Kids-CAT in clinical settings: a newly developed computer-adaptive test to facilitate the assessment of patient-reported outcomes of children and adolescents in clinical practice in Germany.

PURPOSE: To describe the implementation process of a computer-adaptive test (CAT) for measuring health-related quality of life (HRQoL) of children and adolescents in two pediatric clinics in Germany. The study focuses on the feasibility and user experience with the Kids-CAT, particularly the patients' experience with the tool and the pediatricians' experience with the Kids-CAT Report. METHODS: The Kids-CAT was completed by 312 children and adolescents with asthma, diabetes or rheumatoid arthritis. The test was applied during four clinical visits over a 1-year period. A feedback report with the test results was made available to the pediatricians. To assess both feasibility and acceptability, a multimethod research design was used. To assess the patients' experience with the tool, the children and adolescents completed a questionnaire. To assess the clinicians' experience, two focus groups were conducted with eight pediatricians. RESULTS: The children and adolescents indicated that the Kids-CAT was easy to complete. All pediatricians reported that the Kids-CAT was straightforward and easy to understand and integrate into clinical practice; they also expressed that routine implementation of the tool would be desirable and that the report was a valuable source of information, facilitating the assessment of self-reported HRQoL of their patients. CONCLUSIONS: The Kids-CAT was considered an efficient and valuable tool for assessing HRQoL in children and adolescents. The Kids-CAT Report promises to be a useful adjunct to standard clinical care with the potential to improve patient-physician communication, enabling pediatricians to evaluate and monitor their young patients' self-reported HRQoL.

[Effectiveness of School-Based Life Skills Programmes on Secondary Schoolchildren in a High Risk Sample]. / Überprüfung der Effektivität schulischer Gesundheitsprogramme bei Schülerinnen und Schülern der Sekundarstufe I mit besonderen sozialen Belastungen.

Based on a randomized controlled multicentre-design the effect of school-based life skills programmes was investigated in a sample of 102 classes of secondary schools (Hauptschulen) in northern Germany. Self-reports of 1,057 pupils showed positive effects of the programmes on the reduction of smoking. Pupils' life skills improved in the teachers' assessment. The social and the migration status did not moderate the results. Both pupils and teachers evaluated the programmes very positive.

Long-term effects of enteral feeding on growth and mental health in adolescents with anorexia nervosa--results of a retrospective German cohort study.

BACKGROUND/OBJECTIVE: Anorexia nervosa (AN) is a severe eating disorder with a high mortality rate. Treatment regimes show regional and global variation and are sometimes supported by enteral feeding (EF) via nasogastric tube, although risks and benefits are still unclear. We aimed to find out whether EF improves growth and AN recovery and prevents psychiatric comorbidities. SUBJECTS/METHODS: Data were retrospectively collected from medical records and follow-up data were collected via questionnaires. Two hundred and eight female AN patients who were hospitalized below the age of 18 years with a mean follow-up of 6 years were analyzed. We calculated relative risks for the association between EF and suboptimal growth, remission of AN and the occurrence of psychiatric comorbidities, adjusting for potential confounders. RESULTS: A third of the analyzed girls received EF at any time. In the adjusted analyses, we found no significant associations between EF and suboptimal growth, the persistence of AN and the occurrence of psychiatric comorbidities, respectively. CONCLUSION: Our data suggest EF to be neither a risk factor nor beneficial for growth, recovery or persistence of AN and the occurrence of psychiatric comorbidities.

[Child protection from the perspective of child and adolescent medicine]. / Kinderschutz und Frühe Hilfen aus Sicht der Kinder- und Jugendmedizin.

Demands for prevention in the areas of child protection, child development and early education are increasingly being discussed in the health care system, social services and the educational and school system. Concepts in health care include health promotion, risk assessment and primary and secondary prevention. Child protection promotes strategies such as early social support services and at-risk screening and educational systems advocate early intervention and concepts to enhance child development. The complexity of children's developmental needs and their living environments require a comprehensive approach of all three systems and integration of services and interventions. Each child's needs must be individually analysed and services tailored appropriately. A case vignette demonstrates and analyses typical problems of interacting systems. A systemic view of systems of care allows planning of efficient and sustainable social and health care policies.

Psychosexual development in children with disorder of sex development (DSD)--results from the German Clinical Evaluation Study.

Psychosexual development is influenced by biological and psychosocial factors. Human beings show a great variability in psychosexual development both between and within gender-groups. However, there are relatively stable gender-related behaviors and self-perceptions, in which males and females differ distinctly. There is strong evidence that high concentrations of androgens lead to more male-typical behavior and that this also influences gender identity. Disorders of sex development (DSD) provide the opportunity to analyze the role of different factors on psychosexual development. We examined 166 children age 4 to 12 with DSD using instruments concerning gender role behavior, gender identity, and friendship. Results underline the hypothesis, that androgens play a decisive role in the masculinization of gender role behavior in children. There are also some relations between the experience of gender change and psychosexual outcomes which have to be discussed. Nevertheless, results indicated a high congruence between the children's gender identity and gender of rearing.

Outcome of extremely premature infants at early school age: health-related quality of life and neurosensory, cognitive, and behavioral outcomes in a population-based sample in northern Germany.

PURPOSE: The study aimed at collecting regional data to support and establish evidence-based decision-making. METHODS: We investigated a cohort of 154 preterm infants with gestational age <27+0 weeks born between 1997 and 1999 in a defined region of Northern Germany regarding neurosensory and cognitive outcomes, overall disability status, behavioral problems, and health-related quality of life at the age of seven to nine years (mean: eight years, SD seven months). RESULTS: 92 (60%) infants survived, 75 of these 92 (82%) were followed-up. Rates of disability were high: only 27 (36%) showed 'no dysfunction' of neurosensory status, 33 (44%) 'mild dysfunction', 5 (7%) 'moderate dysfunction' and 10 (13%) 'severe dysfunction', including 8 (11%) with non-ambulatory cerebral palsy. 19 (26%) were mentally retarded. Parents reported behavioral problems in 21 (28%), health-related quality of life was lower in preterm infants compared to a representative normal sample. In multivariate analyses IVH III-IV/PVL was an independent risk factor for adverse outcomes. Behavior problems were predicted by low IQ and lower educational level of the mother. CONCLUSIONS: Overall our results confirm high levels of mortality and morbidity in extremely immature infants. Regional data should include mortality, morbidity and health-related quality of life to adequately inform parents about the prognosis.

FLIP&FLAP-a training programme for children and adolescents with epilepsy, and their parents.

OBJECTIVE: The objective of this article is to present the development, contents and efficacy of the FLIP&FLAP programme for children and adolescents with epilepsy, and their parents. INTERVENTION: The programme is mainly directed at age-appropriately developed children and adolescents between 6 and 16 who take antiepileptic drugs. It is conducted as a 2.5-day group training programme; children and parents are grouped separately. The main focuses are: EVALUATION STUDY: We performed a multi-centre non-randomised two-group pre-/post-trial using a waiting-list control group design. 10 German epilepsy centres participated. The intervention group, IG (21 children 8-11 years, 44 adolescents 12-16 years, 72 parents) completed standardised questionnaires immediately before the FLIP&FLAP course and 6 months later; the waiting control group, WCG (31 children, 39 adolescents, 72 parents) 6 months before and immediately before the course. Compared to the WCG, the children and parents of the IG showed significantly improved knowledge of epilepsy, with medium to large effect sizes (univariate analysis of variance with repeated measurements, d=0.6-1.4). Parents of the IG reported improved self-management skills (d=0.7) and communication skills (d=0.8) of their child and fewer epilepsy-related worries (d=0.5). Children and adolescents of the IG reported improved HRQOL in the Social Exclusion dimension (d=0.3). CONCLUSION: FLIP&FLAP is an effective child- and family-centred programme. It is currently being established in Northern Germany to test its usefulness in routine care.

Health status of children with cerebral palsy living in Europe: a multi-centre study.

AIM: The aim of this report is to describe the health status of 8-12-year-old children with cerebral palsy (CP) of all severities in Europe using the Child Health Questionnaire (CHQ). METHOD: A total of 818 children with CP from nine centres in defined geographical areas participated. CP type, gross and fine motor function, additional impairments were classified and family data were obtained. The CHQ was used to measure the parent's perception of their child's physical (PHY) and psychosocial (PSY) health. RESULTS: PHY scores were lower than the reference samples with a median of 46. The severity of gross motor function influenced the CHQ scores significantly in the PHY scale with the lowest scores for children with least gross motor function. There were significant differences between the CP types in PHY with the higher scores for children with unilateral spastic and the lowest scores for children with bilateral spastic and dyskinetic CP type. Fine motor function severity significantly affected both the PHY and PSY scales. The severity of intellectual impairment was significantly associated with CHQ scores in most dimensions with higher scores for higher IQ level in PHY and PSY. Children with seizures during the last year had a significantly lower health compared with children without seizures. The results of the multivariate regression analyses (forward stepwise regression) of CHQ scores on CP subtype, gross and fine motor function, cognitive function, additional impairments, seizures, parental education and employment revealed gross motor function, cognitive level and type of school attended were significant prognostic factors. CONCLUSION: This report is based on the largest sample to date of children with CP. Health status as measured using the CHQ was affected in all children and was highly variable. Gross motor function level correlates with health from the PHY well-being perspective but the PSY and emotional aspects do not appear to follow the same pattern.

Spontaneous pregnancy after successful ICSI treatment: evaluation of risk factors in 899 families in Germany.

There are only scarce data on the incidence of spontaneous pregnancy in infertility patients. Contraception after infertility treatment is another topic that has been neglected so far. Therefore, a questionnaire was sent to 1614 couples with a child conceived by intracytoplasmic sperm injection (ICSI) aged 4-6 years. A total of 899 couples responded (response rate 55.7%). A total of 10.9% of couples had used contraception. Of the couples that had actively tried to conceive, 20.0% had conceived spontaneously, resulting in a live-birth rate of 16.4%. 74.5% of these pregnancies were conceived within 2 years after delivery. A further 26.6% of couples conceived again by ICSI, with a live-birth rate of 20.9%. Maternal age was the only prognostic factor for spontaneous conception. Parents of multiples after ICSI did not have a higher chance of spontaneous conception than parents of singletons. Couples can be counselled that one out of five couples conceive spontaneously after successful ICSI. Even when assuming that none of the families that were lost to follow-up had conceived spontaneously, one out of eight couples would have conceived spontaneously. Therefore, it is important to counsel patients about the possibility of natural conception and necessity to use contraception despite their history of subfertility.

[How to define chronically ill children]. / Was sind chronisch kranke Kinder?

The current overview article highlights specific features of defining chronic illnesses in children with a view on recent methodological developments. Methodological advantages and potential pitfalls of these approaches are discussed. Epidemiological trends are reported taking these definitions and methodological approaches into account. The conceptual interrelationships with other constructs in the area of health service research, for instance quality of life, are demonstrated.

[Health care needs of children and adolescents with chronic conditions]. / Versorgungsbedarf chronisch kranker Kinder und Jugendlicher.

Using data from the German Health Interview and Examination Survey for Children and Adolescents (KiGGS), we studied the association between chronic health conditions and specific health care needs among children and adolescents in Germany. A chronic health condition was defined based on standardized parent questionnaires and computer-assisted parent interviews regarding any lasting illness or health problem, congenital malformation or officially recognized disability. As part of the parent questionnaire, the validated German version of the Children with Special Health Care Needs (CSHCN) screener was used to assess special health care needs. Overall, 38.7% of the study population had at least one chronic health condition, as compared to 73.0% of children and adolescents who were identified as having specific health care needs. Only 25.8% of children and adolescents with chronic health conditions were found to have any special health care needs. However, this proportion varied considerably according to the type of health condition. Overall 3.7% of study participants screened positive for special health care needs, while no specific chronic health condition was reported by their parents. In multiple logistic regression analyses, factors independently associated with the absence of perceived health care needs among children and adolescents with chronic health conditions included female gender, migration background, a lower socioeconomic status, residence in former West Germany, a lower number of concomitant health problems, and the absence of behavioural problems. The identification of special health care needs among children and adolescents without any reported chronic health condition was determined by male gender, having no migration background, and evidence of behavioural problems. Further analyses are necessary to elucidate the relationship between chronic health conditions and health care needs among children and adolescents. These need to focus on specific health conditions and should include additional information on health-related quality of life, health care services use, and psychosocial resources.

Attitudes towards disclosure of conception mode in 899 pregnancies conceived after ICSI.

Little is known about parents' attitude towards disclosure of the mode of conception within families conceived by IVF or intracytoplasmic sperm injection (ICSI) and whether parental disclosure influences the child's emotional adjustment. A questionnaire was sent to 1614 families with ICSI children aged 5-6 years, which included the Strengths and Difficulties Questionnaire (SDQ). Data from 899 families (55.7%) could be evaluated. 2.3% (21/899) of the parents had already disclosed the mode of conception. The mean age at disclosure was 4.5 +/- 1.1 years. 65.6% (590/899) 'intended' to tell their child in future at a mean age of 11.8 +/- 3.6 years. The most common reasons for not disclosing were the opinion about a low level of relevance for the child and the wish to 'protect the child'. There was no evidence of an association between secrecy or disclosure and the emotional and behavioural adjustment of the child. Only a small minority of parents had disclosed the mode of conception by ICSI to their children at the age of 5.5 years. This is similar to what is known about disclosure in third-party reproduction families.