Modeling determinants of satisfaction with health care in youth with inflammatory bowel disease part 2: semiparametric distributional regression.

Background: Methodological challenges arise with the analysis of patient satisfaction as a measure of health care quality. One of them is the necessity to adjust for differences in patient characteristics or other variables. A combination of several helpful extensions to regression analysis is shown based on patients with inflammatory bowel disease (IBD) to help identify important covariates associated with the distribution of satisfaction. Patients and methods: Analyses were based on cross-sectional data from a postal survey on the health care of patients with IBD aged 15-25, with satisfaction assessed using a 32-item validated questionnaire weighing experience by perceived relevance. The weighted summary score was modeled using a Beta distribution in a generalized additive model for location, scale and shape. Covariates were distinguished in 3 groups and the model was entered in separate, consecutive analyses. First, demographic and disease-related variables were included. Next, information about the IBD specialist was added. The third step added care quality indicators. Results are presented as OR with 95% CI. Results: In the survey, 619 questionnaires were returned and the data set had 453 complete cases for analysis. Satisfaction appeared increased for patients working (OR 1.59, 95% CI: 1.19-2.11) or studying (1.25, 1.00-1.56) as compared to those still at school or in non-academic job training. High anxiety scores and an older age of onset were associated with lower satisfaction. The variation of satisfaction is higher for patients with Crohn's disease or who have statutory insurance (1.19, 1.01-1.40 and 1.22, 1.06-1.40). Conclusion: Modeling the entire distribution of the response uncovered additional influences on the variance of patient satisfaction not previously identified by classical regression. It also resulted in a richer model for the mean. The construction of a combined model for different features of the distribution also helped to improve the control of confounding.

School-related experience and performance with inflammatory bowel disease: results from a cross-sectional survey in 675 children and their parents.

OBJECTIVE: We describe school performance and experience in children with inflammatory bowel disease (IBD) across Germany and Austria. Predictors of compromised performance and satisfaction were evaluated to identify subgroups of increased risk. DESIGN: This cross-sectional analysis was based on a postal survey in children aged 10-15 with Crohn's disease, ulcerative colitis or unclassified IBD and their families. Multivariate regression analysis was used to assess influential factors on parental satisfaction with school, attending advanced secondary education (ASE), having good marks and having to repeat a class. Satisfaction was assessed based on the Child Healthcare-Satisfaction, Utilisation and Needs instrument (possible range 1.00-5.00). RESULTS: Of 1367 families contacted, 675 participated in the study (49.4%). Sixty-eight participants (10.2%) had repeated a year, 312 (46.2%) attended ASE. The median school satisfaction score was 2.67 (IQR 2.00-3.33). High socioeconomic status (SES) and region within Germany were predictive for ASE (OR high SES 8.2, 95% CI 4.7 to 14.2). SES, female sex and region of residence predicted good marks. Grade retention was associated with an active disease course (OR 2.7, 95% CI 1.4 to 5.3) and prolonged periods off school due to IBD (OR 3.9, 95% CI 1.8 to 8.6). CONCLUSIONS: A severe disease course impacted on the risk of grade retention, but not on type of school attended and school marks. Low satisfaction of parents of chronically ill children with the school situation underlines the need for a more interdisciplinary approach in health services and health services research in young people.

Modeling determinants of satisfaction with health care in youth with inflammatory bowel disease: a cross-sectional survey.

PURPOSE: Patient satisfaction is frequently used as a health care quality measure despite methodological challenges. By the example of pediatric inflammatory bowel disease (IBD), we assessed factors associated with low satisfaction and examined differences by type of provider. PATIENTS AND METHODS: In a cross-sectional design, a 32-item questionnaire and global questioning were used to assess satisfaction in patients aged 15-25 years. Determinants of low satisfaction were identified by logistic regression (OR with 95% CI). Separate models were calculated for patient-related variables such as age, socioeconomic status (SES), health status (emotional, somatic, quality of life) or region of residence (step 1), and impact of provider (pediatric specialist, adult specialist, no specialist) (step 2). As secondary analysis, we studied the effect of additional indicators such as waiting time, consultation time, and an IBD Management Quality Index (IMQI) on effect estimates (step 3). RESULTS: A total of 567 cases were available for analysis (response 48.2%). The strongest predictors of low satisfaction were anxiety symptoms (OR 2.49, CI 1.14 to 5.45). In step 2, not being seen by a specialist (1.89, 1.16 to 3.10) and having been with the new provider for less than 12 months (1.71, 1.03 to 2.83) were associated with low satisfaction. Satisfaction with adult care provider was similar to pediatric care if adjusted for anxiety, health status, and time with provider (0.95, 0.59 to 1.51). Presence of other quality indicators (step 3), waiting time >30 minutes, consultation time <15 minutes, and low IMQI were all associated with low satisfaction. Age, SES, and region of residence were not found to affect satisfaction in any of the models. CONCLUSION: Anxiety symptoms were most strongly associated with low patient satisfaction. The relevance of recent provider change and not being seen by a specialist underlines the importance of well-planned transition in this age group.

Cross-sectional and longitudinal factors influencing physical activity of 65 to 75-year-olds: a pan European cohort study based on the survey of health, ageing and retirement in Europe (SHARE).

BACKGROUND: The promotion of physical activity (PA) plays a major role for healthy ageing even in older age. There is a lack of cross-sectional and longitudinal studies explicitly dealing with barriers and drivers to PA in older adults. Therefore the aims of this study are a) to determine the prevalence of insufficient physical activity (IPA) in 65 to 75-year-olds in Europe and to identify factors associated with IPA in cross-section and b) to identify longitudinal risk factors for IPA in prior active persons. METHODS: This study is using data of the Survey of Health, Ageing and Retirement in Europe (SHARE). SHARE is a cross-national panel database including individual data of the non-institutionalised population aged 50+ from 27 European countries. For the present paper, we included a cohort that participated in all first four waves of SHARE (2004-2011) aged 65-to-75-years at wave four (male n = 1761, female n = 2085) from 10 European countries. To identify cross-sectional and longitudinal associations, we calculated prevalence odds ratios and hazard ratios with 95% confidence intervals. RESULTS: The prevalence of IPA in 65-75-year-olds varied widely between countries, ranging from 55.4% to 83.3% in women and from 46.6% to 73.7% in men. IPA was associated with several intrapersonal factors and strength of association was similar for men and women for almost all investigated factors. Statistically significant associated with IPA were socioeconomic factors as low educational level (own and parental) and financial difficulties (male: POR: 1.60: 95%-CI: 1.26-2.03; female: POR: 1.58; 95%-CI: 1.26-1.97) and health-related factors as e.g. number of chronic diseases (male: POR: 1.34: 95%-CI: 1.23-1.45; female: POR: 1.31; 95%-CI: 1.21-1.42). Interpersonal only the size of social network was associated with IPA (male and female: POR: 0.88, 95%-CI: 0.81-0.95). Longitudinally in a fully adjusted model, only grip strength (HR: 0.99; CI-95%: 0.98-0.99) and BMI (HR: 1.02; CI-95%: 1.00-1.04) were statistically significant risk factors for IPA. CONCLUSIONS: PA promotion programs for older adults should incorporate the heterogeneity of health status and physical condition that can typically occur in this age group.

Current health status and medical therapy of patients with pediatric-onset inflammatory bowel disease: a survey-based analysis on 1280 patients aged 10-25 years focusing on differences by age of onset.

OBJECTIVE: There are inconsistent reports on age-related differences in inflammatory bowel disease (IBD). On the basis of patient information, we describe the clinical presentation and therapy in relation to age at diagnosis in longstanding pediatric IBD. PATIENTS AND METHODS: Two surveys were conducted in children and young adults (age: 10-25 years) by pretested postal questionnaires. The main analyses are descriptive, showing proportions and distributions per grouped age of diagnosis. Exploratory logistic regression was used to identify sociodemographic and disease-related factors associated with prognosis. Recent disease course, use of biological therapy, and resecting surgery were chosen as indicators of disease severity. Patients with a diagnosis in infancy (<2 years of age) are presented as a case series. RESULTS: Information of 1280 cases was available [804 Crohn's disease (CD), 382 ulcerative colitis (UC), 94 IBD not specified] (response: 44.6 and 49.6%). Stable remission during the preceding year was reported by 675 (56.7%) patients; 825 (60.9%) patients reported feeling currenty well. Anti-tumor necrosis factor therapy was reported by 33% of CD patients and 9.3% of UC patients, immunomodulation in 82.1 and 63.2%, and corticosteroids by 78.4 and 76.1%, respectively (ever use). Age at diagnosis was not associated with indicators of severe disease. Diagnosis in infancy was reported by 37 patients. CONCLUSION: Our data do not support age at diagnosis-related differences in prognosis in pediatric-onset IBD.

Transition from pediatric to adult medical care - A survey in young persons with inflammatory bowel disease.

BACKGROUND: Transition to adult health services is a vulnerable phase in young persons with chronic disease. We describe how young persons with inflammatory bowel disease in Germany and Austria experience care during the transitional age, focusing on differences by type of provider (pediatric vs. adult specialist, no specialist). METHODS: This was a follow up survey in patients previously registered with a pediatric IBD registry. Patients aged 15 to 25 received a postal questionnaire, including a measure of health care experience and satisfaction. Descriptive analyses were stratified by age. Sub-analyses in the 18-20 year age group compared health care experience by type of provider. Determinants of early or late transfer were examined using multinomial logistic regression. RESULTS: 619 patients responded to the survey; 605 questionnaires were available for analysis. Usual age of completing transition was 18. Earlier transfer was more common with low parental SES (OR 1.8, 95% CI 0.7 to 4.6), and less common with advanced schooling (OR 0.5, 95% CI 0.2 to 1.2). Structured transition was uncommon. 48% of the respondents had not received any preceding transition advice. Overall satisfaction with IBD care was high, especially with respect to interpersonal aspects, but less so in aspects of continuity of care. CONCLUSIONS: Despite high overall patient satisfaction, relevant deficiencies in transitional care were documented. Some of these were associated with lower parental social status. Differences in health care satisfaction by type of provider (adult vs. pediatric) were small.

Longitudinal associations of lifestyle factors and weight status with insulin resistance (HOMA-IR) in preadolescent children: the large prospective cohort study IDEFICS.

BACKGROUND: This study investigates prospective associations of anthropometrical and lifestyle indices with insulin resistance (IR) in European children from the IDEFICS cohort. Insulin resistance (IR) is a growing concern in childhood obesity and a central aspect of the metabolic syndrome (MS). It most likely represents the link between obesity and type 2 diabetes. METHODS: This longitudinal study included 3348 preadolescent children aged 3 to 10.9 years from 8 European countries who were observed from 2007/2008 to 2009/2010. The main outcome measure in the present analysis is HOMA-IR (homeostasis model assessment as a common proxy indicator to quantify IR) at follow-up and in its longitudinal development. Anthropometrical measures and lifestyle indices, including objectively determined physical activity, were considered, among others factors, as determinants of IR. Prospective associations between IR at follow-up and anthropometrical and lifestyle indices were estimated by logistic regression models. RESULTS: Country-specific prevalence rates of IR in the IDEFICS cohort of European children showed a positive trend with weight category. Prospective multivariate analyses showed the strongest positive associations of IR with BMI z-score (OR = 2.6 for unit change from the mean, 95 % CI 2.1-3.1) and z-score of waist circumference (OR = 2.2 for unit change from the mean, 95 % CI 1.9-2.6), which were analysed in separate models, but also for sex (OR = 2.2 for girls vs. boys, 95 % CI 1.5-3.1 up to OR 2.5, 95 % CI 1.8-3.6 depending on the model), audio-visual media time (OR = 1.2 for an additional hour per day, 95 % CI 1.0-1.4 in both models) and an inverse association of objectively determined physical activity (OR = 0.5 for 3(rd) compared to 1(st) quartile, 95 % CI 0.3-0.9 in both models). A longitudinal reduction of HOMA-IR was accompanied with a parallel decline in BMI. CONCLUSIONS: This study is, to our knowledge, the first prospective study on IR in a preadolescent children's population. It supports the common hypothesis that overweight and obesity are the main determinants of IR. Our data also indicate that physical inactivity and a sedentary lifestyle are likewise associated with the development of IR, independent of weight status. The promotion of physical activity should thus be considered as an equal option to dietary intervention for the treatment of IR in the paediatric practice.

Measuring satisfaction with health care in young persons with inflammatory bowel disease--an instrument development and validation study.

BACKGROUND: Patient satisfaction is a relevant prognostic factor in young persons with chronic disease and may be both age and disease specific. To assess health care quality from the patient's view in young persons with inflammatory bowel disease, an easy to use, valid, reliable and informative specific instrument was needed. METHODS: All parts of the study were directed at persons with inflammatory bowel disease aged 15 to 24 ("youth"). A qualitative internet patient survey was used to generate items, complemented by a physician survey and literature search. A 2nd internet survey served to reduce items based on perceived importance and representativeness. Following pilot testing to assess ease of use and face validity, 150 respondents to a postal survey in patients from a paediatric clinical registry were included for validation analyses. Construct validity was assessed by relating summary scores to results from global questions on satisfaction with care using ANOVA. To assess test-retest reliability using intraclass correlation coefficients (ICC), a subset of patients were assessed twice within 3 months. RESULTS: 302 persons with IBD and 55 physicians participated in the item generating internet survey, resulting in 3,954 statements. After discarding redundancies 256 statements were presented in the 2nd internet survey. Of these, 32 items were retained. The resulting instrument assesses both the perceived relevance (importance) of an item as well as the performance of the care giver for each item for calculation of a summary satisfaction score (range 0 to 1). Sensibility testing showed good acceptance for most items. Construct validity was good, with mean scores of 0.63 (0.50 to 0.76), 0.71 (0.69 to 0.74) and 0.81 (0.79 to 0.83) for no, some and good global satisfaction (ANOVA, p < 0.001). Test-retest reliability was satisfactory (ICC 0.6 to 0.7). CONCLUSIONS: We developed an easy to use, patient oriented, valid instrument to assess satisfaction with care in young persons with IBD for use in survey research.

Early life course risk factors for childhood obesity: the IDEFICS case-control study.

BACKGROUND: The early life course is assumed to be a critical phase for childhood obesity; however the significance of single factors and their interplay is not well studied in childhood populations. OBJECTIVES: The investigation of pre-, peri- and postpartum risk factors on the risk of obesity at age 2 to 9. METHODS: A case-control study with 1,024 1:1-matched case-control pairs was nested in the baseline survey (09/2007-05/2008) of the IDEFICS study, a population-based intervention study on childhood obesity carried out in 8 European countries in pre- and primary school settings. Conditional logistic regression was used for identification of risk factors. RESULTS: For many of the investigated risk factors, we found a raw effect in our study. In multivariate models, we could establish an effect for gestational weight gain (adjusted OR = 1.02; 95%CI 1.00-1.04), smoking during pregnancy (adjusted OR = 1.48; 95%CI 1.08-2.01), Caesarian section (adjusted OR = 1.38; 95%CI 1.10-1.74), and breastfeeding 4 to 11 months (adjusted OR = 0.77; 95%CI 0.62-0.96). Birth weight was related to lean mass rather than to fat mass, the effect of smoking was found only in boys, but not in girls. After additional adjustment for parental BMI and parental educational status, only gestational weight gain remained statistically significant. Both, maternal as well as paternal BMI were the strongest risk factors in our study, and they confounded several of the investigated associations. CONCLUSIONS: Key risk factors of childhood obesity in our study are parental BMI and gestational weight gain; consequently prevention approaches should target not only children but also adults. The monitoring of gestational weight seems to be of particular importance for early prevention of childhood obesity.

High-sensitivity C-reactive protein is a predictive factor of adiposity in children: results of the identification and prevention of dietary- and lifestyle-induced health effects in children and infants (IDEFICS) study.

BACKGROUND: Whereas cross-sectional studies have shown that obesity is associated with increased C-reactive protein (CRP) levels in children, little is known about the impact of low-grade inflammation on body mass changes during growth. METHODS AND RESULTS: We assessed cross-sectionally and longitudinally the association of high-sensitivity (hs)-CRP levels with overweight/obesity and related cardiometabolic risk factors in the Identification and prevention of Dietary- and lifestyle-induced health Effects in Children and InfantS (IDEFICS) cohort. 16 224 children from 8 European countries (2 to 9 years) were recruited during the baseline survey (T0). After the exclusion of 7187 children because of missing hs-CRP measurements and 2421 because of drug use during the previous week, the analysis was performed on 6616 children (Boys=3347; Girls=3269; age=6.3 ± 1.7 years). Of them, 4110 were reexamined 2 years later (T1). Anthropometric variables, blood pressure, hs-CRP, blood lipids, glucose and insulin were measured. The population at T0 was divided into 3 categories, according to the baseline hs-CRP levels. Higher hs-CRP levels were associated with significantly higher prevalence of overweight/obesity, body mass index (BMI) z-score and central adiposity indices (P values all <0.0001), and with higher blood pressure and lower HDL-cholesterol levels. Over the 2-year follow-up, higher baseline hs-CRP levels were associated with a significant increase in BMI z-score (P<0.001) and significantly higher risk of incident overweight/obesity. CONCLUSIONS: Higher hs-CRP levels are associated to higher body mass and overweight/obesity risk in a large population of European children. Children with higher baseline levels of hs-CRP had a greater increase in BMI z-score and central adiposity over time and were at higher risk of developing overweight/obesity during growth.

Blood cells as a source of transcriptional biomarkers of childhood obesity and its related metabolic alterations: results of the IDEFICS study.

BACKGROUND: IDEFICS (Identification and Prevention of Dietary- and Lifestyle-Induced Health Effects in Children and Infants Project) is a European multicenter study on childhood obesity. One of its goals is to define early biomarkers of risk associated with obesity and its comorbid conditions. OBJECTIVE: We considered blood cells as a new potential source of transcriptional biomarkers for these metabolic disorders and examined whether blood cell mRNA levels of some selected genes (LEPR, INSR, CPT1A, SLC27A2, UCP2, FASN, and PPARα) were altered in overweight children and whether their expression levels could be defined as markers of the insulin-resistant or dyslipidemic state associated with overweight. DESIGN: Blood samples were obtained from 306 normal-weight and overweight children, aged 2-9 yr, from eight different European countries. Whole-blood mRNA levels were assessed by quantitative RT-PCR. RESULTS: LEPR, INSR, and CPT1A mRNA levels were higher in overweight compared with normal-weight children (the two latter only in males), whereas SLC27A2 mRNA levels were lower in overweight children. Significant associations were also found between expression levels of LEPR, INSR, CPT1A, SLC27A2, FASN, PPARα, and different parameters, including body mass index, homeostasis model assessment index, and plasma triglycerides and cholesterol levels. These associations showed that high expression levels of CPT1A, SLC27A2, INSR, FASN, or PPARα may be indicative of a lower risk for the insulin-resistant or dyslipidemic state associated with obesity, whereas low LEPR mRNA levels appear as a marker of high low-density lipoprotein cholesterol, independently of body mass index. CONCLUSIONS: These findings point toward the possibility of using the expression levels of these genes in blood cells as markers of metabolic status and can potentially provide an early warning of a future disorder.

[IDEFICS: a multicenter European project on diet- and lifestyle-related disorders in children]. / IDEFICS: ein europäisches multizentrisches Projekt zu ernährungs- und lebensstilbedingten Erkrankungen im Kindesalter.

The environment of children has drastically changed in Europe during the last decades as reflected in unhealthy dietary habits and a sedentary lifestyle. Nutrition obviously plays a part in the development of overweight and obesity in childhood. However, dietary factors and physical activity are also involved in the development of metabolic syndrome, diabetes, cardiovascular diseases, osteoporosis, and postural deformities like scoliosis. To stop the resulting epidemic of diet- and lifestyle-induced morbidity, efficient evidence-based approaches are needed. These issues are the focus of IDEFICS (Identification and prevention of dietary- and lifestyle-induced health effects in children and infants), an Integrated Project within the 6th framework program of the European Commission. The IDEFICS consortium comprises 24 research centers and small or medium enterprises across Europe. One part of IDEFICS will investigate the etiology of selected diet- and lifestyle-related diseases in 2- to 10-year-old children. The impact of sensory perception and other internal and external triggers of children's food choices and consumer behavior will be studied in this context. Another part of IDEFICS will develop and evaluate strategies for the primary prevention of diet- and lifestyle-related diseases. The results of the project shall contribute to the development of harmonized European guidelines on diet and lifestyle for health promotion and disease prevention in children.