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Quality of life profile in children/adolescents with chronic conditions: A meta-analysis with the KIDSCREEN questionnaires

N. da Silva, M. Pereira, C. Otto, U. Ravens-Sieberer, MC. Canavarro, M. Bullinger (2019, September). 

Oral communication presented at the 14. Kongress der Fachgruppe Gesundheitspsychologie: Gesundheitspsychologie - individualisiert, bevölkerungsbezogen und versorgungsrelevant?, Greifswald, Germany.

Wahrnehmung der Stigmatisierung von Menschen mit Psoriasis - eine qualitative Analyse aus Patientensicht, deren Angehörigen und Leistungserbringern

R. Sommer, M. Augustin, U. Mrowietz, J. Topp, I. Schäfer, R. von Spreckelsen (2019, May). 

50. Jahrestagung der Deutschen Dermatologischen Gesellschaft 2019: P310

Disease burden and patient needs in emerging adults and adults with psoriasis: Addressing developmental specificities for person-centered healthcare.

N. da Silva, M. Augustin, A. Langenbruch, A. Dankworth, R. Sommer (2019, October).

Oral communication presented at the 18. Deutscher Kongress für Versorgungsforschung (DKVF): Gemeinsam Verantwortung übernehmen für ein lernendes Gesundheitssystem, Berlin, Germany.

DOI:
10.13140/RG.2.2.12807.14247

Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment

J. Bloemeke1, N. Silva2,3, M. Bullinger2, S. Witt2, H-G. Dörr4, J. Quitmann2

1Center for Psychosocial Medicine, Institute for Medical Psychology, University Medical Center Hamburg-Eppendorf in Hamburg, Hamburg, Germany. j.bloemeke@uke.de

2Center for Psychosocial Medicine, Institute for Medical Psychology, University Medical Center Hamburg-Eppendorf in Hamburg, Hamburg, Germany

3Center for Research in Neuropsychology and Cognitive and Behavioral Intervention (CINEICC), Faculty of Psychology and Education Sciences, University of Coimbra, Coimbra, Portugal

4Clinic for Children and Adolescents, University Hospital Erlangen-Nurnberg, Erlangen, Germany

Health Qual Life Out. 2019;17:49

 

The Quality of Life of Short Stature Youth (QoLISSY) questionnaire is a patient- and parent-reported outcome measure assessing health-related quality of life (HRQOL) in short stature youth. This study evaluates the psychometric properties of the QoLISSY questionnaire within a German prospective trial of short statured children treated with human growth hormone (hGH).

PMID:
30885197
DOI:
10.1186/s12955-019-1118-9

Skin Disease Implications for Self-Image Development in Adolescence and Young Adulthood.

CF. Zimmermann, TA. Revenson (June 2019).

Oral Presentation accepted for the European Society for Dermatology and Psychiatry Congress, Giessen, Germany.

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

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

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
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