Cross-cultural development of a child health care questionnaire on satisfaction, utilization, and needs

OBJECTIVE: The instrument Child Health Care-Satisfaction, Utilization and Needs (CHC-SUN) has been developed cross-culturally to evaluate pediatric health care services for children with special health care needs (CSHCN) from the proxy perspective of parents. METHODS: The children of the participating parents received treatment in pediatric specialty clinics in 7 European countries for asthma, cystic fibrosis, diabetes, epilepsy, cerebral palsy, rheumatoid arthritis, and atopic dermatitis. The instrument was developed through a process including literature review, expert consensus, and item generation through focus groups. The pilot instrument was extensively tested to assess psychometric properties, support item reduction, and evaluate clinical validity. The final field version was tested in a new sample of 795 parents in 7 countries. RESULTS: Pilot testing and item reduction resulted in a practical 40-item instrument with 14 single items related to provision of services (module 1), and 26 items related to 6 scales on satisfaction with care (module 2), and 1 item on general satisfaction with care. Satisfaction with care scales showed very good psychometric properties, both initially and in the field version, with Cronbach's alpha ranging between .80 and .95 in the revised scales. Both modules discriminated well between functional status and diagnosis across countries. CONCLUSIONS: A new instrument is available to measure provision of services and satisfaction with care for children with chronic conditions from the perspective of parents. Cross-cultural analysis reveals that the measure is useful in multinational studies evaluating health services against the background of different health systems

Lower Frequency of Insulin Pump Treatment in Children and Adolescents of Turkish Background with Type 1 Diabetes: Analysis of 21,497 Patients in Germany

Icks A, Razum O, Rosenbauer J, et al. Lower Frequency of Insulin Pump Treatment in Children and Adolescents of Turkish Background with Type 1 Diabetes: Analysis of 21,497 Patients in Germany. Diabetes Technology &amp; Therapeutics. 2012;14(12):1105-1109.Aim: This study investigated insulin pump therapy in pediatric patients with type 1 diabetes and Turkish origin compared with those without migration background in Germany. Subjects and Methods: Using a nationwide documentation program, we estimated the prevalence of insulin pump therapy in patients <20 years of age with Turkish origin and those without migration background. Logistic regression was used to adjust for age, sex, diabetes duration, body mass index SD score (BMI-SDS), glycated hemoglobin, number of outpatient visits, number of daily blood glucose self-measurements, and area-based socioeconomic conditions. Results: In 1,695 pediatric type 1 diabetes patients with Turkish background and 19,802 patients without migration background (respectively: 51.2% and 53.0% boys; mean age, 12.4 +/- 4.1 and 12.6 +/- 4.2 years; mean diabetes duration, 4.7 +/- 3.9 and 5.3 +/- 4.0 years), fully adjusted prevalences of insulin pump therapy were 18.5% and 30.9%, respectively (odds ratio 0.51, 95% confidence interval 0.43-0.60, P < 0.001). Age, sex, BMI-SDS, outpatient visits, and blood glucose self-control were significantly associated with the prevalence of insulin pump therapy but did not alter the difference substantially. Conclusions: The prevalence of insulin pump therapy is roughly half among pediatric diabetes patients with Turkish background compared with those without migration background. Several covariates could not explain this difference. Individual characteristics or access barriers within the healthcare system may play a role. Further research is needed

Multicentre cross-sectional clinical evaluation study about quality of life in adults with disorders/differences of sex development (DSD) compared to country specific reference populations (dsd-LIFE)

Background: Previous studies in quality of life (QOL) in individuals with disorders/differences of sex development (DSD) have been restricted to subpopulations of the condition. We describe QOL in adult persons with DSD compared to country specific references and assess the impact of diagnosis.Methods: The multicentre cross-sectional clinical evaluation (dsd-LIFE) took place in 14 specialized clinics in six European countries. Adolescents (≥16 years) and adults having a DSD condition were included from 02/2014 to 09/2015. The main outcome QOL was measured by the WHOQOL-BREF (domains of physical health, psychological, social relationships, and environment). QOL was compared to country specific reference populations by using unpaired t-tests. Linear regression models explained the additional variance of the diagnosis on QOL.Results: Three hundred one individuals with Turner Syndrome, 219 with Klinefelter Syndrome (including XYY), 226 with 46,XX CAH and 294 with rare DSD conditions (gonadal dysgenesis, androgen insensitivity syndrome, severe hypospadias, and androgen synthesis errors or other diagnosis) took part. Compared to healthy European populations, QOL was similar in psychological, slightly worse in physical health, and slightly better in environment. In social relationships, QOL was significantly poorer compared to healthy and non-healthy reference populations. In linear regression models health status was the most important predictor of QOL; additional variance was explained by feelings about household's income in all domains, and the relationship status in social relationships. Diagnosis explained nearly no additional variance.Conclusions: Except for social relationships, most people with DSD adapt well to their life circumstances and report a good QOL. Not diagnosis, but the individual's health status is much more important than previously thought. Therefore care for people with DSD should focus more on chronic physical or mental health problems both related and unrelated to the diagnosis itself.Trial registration: German Clinical Trials Register DRKS00006072

The association between socio-economic status and diabetes care and outcome in children with diabetes type 1 in Germany: The DIAS study (diabetes and social disparities)

Objective To evaluate the association between socioeconomic status (SES) and diabetes outcomes in German children and adolescents. Methods A total of 1829 subjects <18 years old with type 1 diabetes mellitus from 13 German diabetes centers were included from June 2013 until June 2014. Data were collected within the multicenter DPV (Diabetes Prospective Follow-up) registry. SES was measured with a composite index. Multivariable regression models were applied to analyze the association of SES and outcomes adjusted for age, sex, diabetes duration, and migration status. Results Low SES was significantly associated with worse diabetes outcomes: higher hemoglobin A1C (HbA1c) (64.3 mmol/mol), lower proportion of insulin pump therapy (43.6%), fewer daily self-monitored blood glucose (SMBG) measurements (5.7), more inpatient days per patient-year (5.8) compared to patients with medium/high SES (HbA1c: 61.3 mmol/mol, P < 0.001/59.8 mmol/mol, P < 0.0001; proportion of pump therapy: 54.5%, P < 0.01/ 54.9%, P < 0.01; SMBG: 6.0, P < 0.01/ 6.1, P < 0.01; inpatient days: 4.5, P < 0.0001/3.4, P < 0.0001). The inclusion of migration status in the models resulted in only minor changes in the outcomes. Conclusion Despite free health care, low SES is associated with unfavorable diabetes outcomes in Germany. The poorer diabetes outcomes of children with diabetes have been attributed to their migration status and may be partly explained by low SES. Both factors must become part of targeted diabetes care in children and adolescents with type 1 diabetes

The association between educational status and diabetes outcomes: results of the DIAS study in children with diabetes type 1 in Germany

Objective To evaluate the association between parents' educational status and diabetes outcomes in German children and adolescents and to compare educational status and individual socioeconomic status (SES). Methods The study included a total of 1781 patients < 18 years old with type 1 diabetes mellitus from 13 German diabetes centers. The analysis was based on data from the DIAS study collected from June 2013 until June 2014 in order to analyse the associations of SES and various diabetes outcomes. The DIAS study measured SES with a composite index based on parents' educational status, occupational status and household income and presented unfavourable outcomes for patients with a low SES. In a secondary analysis of the DIAS data, analyses have been run again with parents' educational status only in order to examine its applicability as a short indicator of SES. Data were collected within the multicenter DPV ( Diabetes Prospective Follow- up) registry. Multivariable regression models ( linear, logistic, negativ-binomial or Poisson- models depending on the distributional characteristics of the outcomes) were applied to analyze the associations of parents' educational status and diabetes outcomes, adjusted for age, sex, diabetes duration, and eventually migration background. Results Low educational status was significantly associated with higher hemoglobin A1C (HbA1c) compared to medium/high educational status (8,1 % compared to 7,8 %, p < 0,0001/ 7,6 %, p < 0,0001), and lower proportion of insulin pump therapy (42,7 % versus 56,3 %, p < 0,0001/52,5 %, p < 0,01). Patients with a background of low educational status also reported fewer daily self- monitored blood glucose (SMBG) measurements, higher Body-Mass-Index, and more inpatient days per year. Severe hypoglycemic events and ketoacidosis were not more frequent in patients with low educational status. The educational status measure was able to discriminate between the social groups as well as the complex SES measure. Conclusion Parents' low educational status is an important predictor for unfavorable outcomes in German children with type-1 diabetes. We should incorporate this aspect in targeted diabetes care and education. As a short and practicable indicator, parents' educational status can estimate the social status of the patients in routine collection of diabetes data