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Erste Daten und Strategien zur Entstigmatisierung

R. Sommer (2019, May)

50. Jahrestagung der Deutschen Dermatologischen Gesellschaft 2019 (invited talk): MS08/03

„People-Centered Health Care“ von CLCI bis Entstigmatisierung: Neue Versorgungskonzepte bei Hauterkrankungen

R. Sommer (2019, May)

50. Jahrestagung der Deutschen Dermatologischen Gesellschaft 2019 (invited talk): AKS17/01

Leitliniengerechte Behandlung/Adhärenz/Präferenz

R. Sommer (2019, May)

50. Jahrestagung der Deutschen Dermatologischen Gesellschaft 2019 (invited talk): MS26/02

People-Centered Health Care (PCHC) in der Dermatologie: Ansätze für eine Versorgung im Rahmen der WHO-Forderung.

R. Sommer, M. Augustin (2019, May). 

50. Jahrestagung der Deutschen Dermatologischen Gesellschaft 2019: P315

Quality of life of short-statured children born small for gestational age or idiopathic growth hormone deficiency within 1 year of growth hormone treatment

J. Quitmann1, J. Bloemeke1, N. Silva1,2, M. Bullinger1, S. Witt1, I. Akkurt3, D.Dunstheimer4, C. Vogel5, V. Böttcher6, U. Kuhnle Krahl7, M. Bettendorf8, E. Schönau9, S. Fricke-Otto10, A. Keller11, K. Mohnike12, H-G. Dörr13

1Center for Psychosocial Medicine, Institute for Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany

2Faculty of Psychology and Education Sciences, Center for Research in Neuropsychology and Cognitive Behavioral Intervention, University of Coimbra, Coimbra, Portugal

3Children and Adolescent Endocrinology, MVZ am AKK GmbH, Hamburg, Germany

4Clinic for Children and Adolescents, Augsburg Hospital, Augsburg, Germany

5Clinic for Children and Adolescent Medicine, Chemnitz Hospital, Chemnitz, Germany

6Endocrinology Clinic, Frankfurt am Main, Germany

7Diabetes Center, Gauting, Germany

8Center for Children and Adolescent Medicine, University Clinic of Heidelberg, Heidelberg, Germany

9Pediatric Endocrinology, University Clinic of Cologne, Cologne, Germany

10Center for Children and Adolescent Medicine, HELIOS Hospital, Krefeld, Germany

11Kinderzentrum am Johannisplatz, Leipzig, Germany

12University Children's Clinic, Otto von Geuricke University, Magdeburg, Germany

13Clinic for Children and Adolescents, Erlangen-Nürnberg Universtiy, Erlangen, Germany

Front Pediatr. 2019;7:164

 

Aside from clinical endpoints like height gain, health-related quality of life has also become an important outcome indicator in the medical field. However, the data on short stature and health-related quality of life is inconsistent. Therefore, we examined changes in health-related quality of life in German children with idiopathic growth hormone deficiency or children born small for gestational age before and after 12 months of human growth hormone treatment. Children with idiopathic short stature without treatment served as a comparison group. At baseline, health-related quality of life data of 154 patients with idiopathic growth hormone deficiency (n = 65), born small for gestational age (n = 58), and idiopathic short stature (n = 31) and one parent each was collected. Of these, 130 completed health-related quality of life assessments after 1-year of human growth hormone treatment. Outcome measures included the Quality of Life in Short Stature Youth questionnaire, as well as clinical and sociodemographic data. Our results showed that the physical, social, and emotional health-related quality of life of children treated with human growth hormone significantly increased, while untreated patients with idiopathic short stature reported a decrease in these domains. Along with this, a statistically significant increase in height in the treated group can be observed, while the slight increase in the untreated group was not significant. In conclusion, the results showed that human growth hormone treatment may have a positive effect not only on height but also in improving patient-reported health-related quality of life of children with idiopathic growth hormone deficiency and children born small for gestational age.

PMID:
31111024
DOI:
10.3389/fped.2019.00164

Maßnahmen zum Abbau von Stigmatisierung und Ausgrenzung von Menschen mit chronischen Hauterkrankungen: Ergebnisse einer Pilot-Intervention bei Jugendlichen

R. Sommer, T. Bock, M. Augustin (2019, May). 

50. Jahrestagung der Deutschen Dermatologischen Gesellschaft 2019: P317

Validation of the Greek version of Quality of Life in Short Stature Youth (QoLISSY) questionnaire

C. Drosatou1,2, E-A. Vlachopapadopoulou3, M. Bullinger4, J. Quitmann4, N. Silva4,5, G.Salemi6, I. Pavlopoulou7, S. Michalacos3, K. Tsoumakas7

1Department of Endocrinology-Growth and Development, Athens General Children's Hospital "P. & A. Kyriakou", Thivon & Levadeias str., Athens 11527, Greece

2Nursing Department, National and Kapodistrian University of Athens, Athens, Greece, Phone: +302132009527

3Department of Endocrinology-Growth and Development, Athens General Children's Hospital "P. & A. Kyriakou", Athens, Greece

4Department of Medical Psychology, University Hamburg-Eppendorf, Hamburg, Germany

5Faculty of Psychology and Educational Sciences, University of Coimbra, Coimbra, Portugal

6Department of Nursing Administration, Athens General Children's Hospital "P. & A. Kyriakou", Athens, Greece

7Nursing Department, National and Kapodistrian University of Athens, Athens, Greece

J Pediatr Endocrinol Metab. 2019;32(3):215-24

 

Background The Quality of Life in Short Stature Youth (QoLISSY) questionnaire is a condition-specific instrument for measuring the health-related quality of life (HRQoL) in short statured children/adolescents from patients' and parents' perspectives. The aim of this study was to investigate the psychometric properties of the Greek version of the QoLISSY questionnaire. 

PMID:
30735483
DOI:
10.1515/jpem-2018-0403

Same language, different culture: Differential item functioning and factor structure of the DISABKIDS-37 questionnaire in Portuguese and Brazilian children/adolescents with asthma and diabetes

N. da Silva, CB. dos Santos, C. Carona, S. Nunes, H. Moreira, C. Fegadolli, MC. Canavarro, M. Bullinger (2018, October). 

Poster session presented at the ISOQOL 25th Annual Conference, Dublin, Ireland. 

DOI:
10.13140/RG.2.2.22985.19046

First year predictors of health-related quality of life changes in short statured children treated with human growth hormone

J. Quitmann1, J. Bloemeke2, H-G. Dörr3, M. Bullinger2, S. Witt2, N. Silva2,4

1Center for Psychosocial Medicine, Institute for Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52, 20246, Hamburg, Germany. j.quitmann@uke.de

2Center for Psychosocial Medicine, Institute for Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52, 20246, Hamburg, Germany

3Division Paediatric Endocrinology, Hospital for Children and Adolescents, University Erlangen-Nürnberg, Erlangen, Germany

4Faculty of Psychology and Education Sciences, Center for Research in Neuropsychology and Cognitive Behavioral Intervention, University of Coimbra, Coimbra, Portugal

J Endocrinol Invest. 2019

 

Little attention has been directed towards examining the impact of predictors on change in health-related quality of life (HRQOL) within the course of growth hormone (GH) treatment in pediatric short stature. We aimed to assess changes in HRQOL and its sociodemographic, clinical and psychosocial predictors in children and adolescents diagnosed with growth hormone deficiency (GHD), and born short for gestational age (SGA) before and 12-month after start of GH treatment from the parents' perspective. Results were compared with an untreated group with idiopathic short stature (ISS). In this prospective multicenter study, 152 parents of children/adolescents (aged 4-18 years) provided data on their children's HRQOL at baseline and at 12-month follow-up.

PMID:
Epub 2019 Mar 6. 30840207
DOI:
10.1007/s40618-019-01027-4

Do 8- to 18-year-old children/adolescents with chronic physical health conditions have worse health-related quality of life than their healthy peers? A meta-analysis of studies using the KIDSCREEN questionnaires

N. Silva1,2, M. Pereira3, C. Otto4, U. Ravens-Sieberer4, M. C. Canavarro3, M. Bullinger5

1Centre for Research in Neuropsychology and Cognitive Behavioral Intervention, Faculty of Psychology and Education Sciences of the University of Coimbra, Rua do Colégio Novo, 3000-115, Coimbra, Portugal. neuzambsilva@gmail.com

2Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraβe 52, W26, 20246, Hamburg, Germany. neuzambsilva@gmail.com

3Centre for Research in Neuropsychology and Cognitive Behavioral Intervention, Faculty of Psychology and Education Sciences of the University of Coimbra, Rua do Colégio Novo, 3000-115, Coimbra, Portugal

4Department of Child and Adolescent Psychiatry and Psychotherapy, University Medical Center Hamburg-Eppendorf, Martinistraβe 52, W29, 20246, Hamburg, Germany

5Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraβe 52, W26, 20246, Hamburg, Germany

Qual Life Res. 2019

 

This meta-analytic review aimed to estimate the magnitude of health-related quality of life (HrQoL) impairments, as assessed by the KIDSCREEN questionnaires, both self- and parent-reported, in 8- to 18-years-old children/adolescents with chronic health conditions.

PMID:
Epub 2019 May 4. 31055778
DOI:
10.1007/s11136-019-02189-7
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