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2019

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. 

Hautläsionen, Hautpflege und Eigenschaften von Juckreiz bei Patienten mit Urämie nach Hämodialyse

R. Sommer, S. Ständer, M. Augustin (2019, May). 

50. Jahrestagung der Deutschen Dermatologischen Gesellschaft 2019: P267

Strategies to reduce stigma related to visible chronic skin diseases: a systematic review

J Topp1, V Andrees1, N A Weinberger2, I Schäfer1, R Sommer1, U Mrowietz3, C Luck-Sikorski2, M Augustin1

1German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

2SRH University of Applied Health Science, Gera, Germany

3Psoriasis-Center, Department of Dermatology, University Medical Center Schleswig-Holstein, Kiel, Germany

J Eur Acad Dermatol Venereol. 2019 Nov;33(11):2029-2038

 

Many patients with a visible chronic skin disease experience discrimination and stigmatization. This results in psychosocial impairments in addition to the burden of disease and emphasizes the urgency to implement effective stigma-reduction strategies. To synthesize what is known globally about effective interventions to reduce stigma associated with visible chronic skin diseases, a systematic review was conducted. Four electronic databases were searched until May 2018. Studies evaluating interventions to reduce stigmatization in patients with visible chronic skin diseases and applying at least one stigma-related outcome measure were included. Data were extracted on study design, country, study population, outcome measures and main findings. Results were subsequently synthesized in a narrative review. Critical Appraisal Skills Programme tools were used to assess study quality. Nineteen studies were included in the review. Study design was very heterogeneous and study quality rather poor. Thirteen studies addresses patients with leprosy in low- and middle-income countries, and one study each targeted patients with onychomycosis, leg ulcer, facial disfigurement, atopic dermatitis, vitiligo and alopecia. Evaluated interventions were mainly multi-faceted incorporating more than one type of intervention. While 10 studies focused on the reduction in self-stigma and 4 on the reduction in public stigma, another 5 studies aimed at reducing both. The present review revealed a lack of high-quality studies on effective approaches to reduce stigmatization of patients with visible chronic skin diseases. Development and evaluation of intervention formats to adequately address stigma is essential to promote patients' health and well-being.

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.

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.

Epidemiology and dermatological comorbidity of seborrhoeic dermatitis: population-based study in 161 269 employees

N Zander1, R Sommer1, I Schäfer1, R Reinert1, N Kirsten1, B-C Zyriax1, J-T Maul2, M Augustin1

1Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

2Department of Dermatology, University Hospital of Zurich, Zurich, Switzerland

Br J Dermatol. 2019 Oct;181(4):743-748

 

Seborrhoeic dermatitis is a common but epidemiologically poorly researched chronic skin disease.

Objectives: To characterize the prevalence and dermatological comorbidity of seborrhoeic dermatitis in Germany.

Cross-cultural selection and validation of instruments to assess patient-reported outcomes in children and adolescents with achondroplasia

J. Bloemeke1, R. Sommer2, S. Witt3, M Bullinger3, C. Nordon4, F. J. Badia4, F. Luna González5, A. Leiva-Gea5, F. de Borja Delgado Rufino5, F. Mayoral-Cleries6, P. Romero-Sanchiz6,7,8, V. Clamagirand Saiz6, R. Nogueira-Arjona8, K. Mohnike9, J. Quitmann3

1Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 | W 26, 20246, Hamburg, Germany. j.bloemeke@uke.de

2Center for Psychosocial Medicine, Institute of Health Care Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf, Hamburg, Germany

3Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 | W 26, 20246, Hamburg, Germany

4LASER Analytica, Tour CIT 3 rue de l'arrivée, 75015, Paris, France

5Unidad de Cirugía Ortopédica y Traumatología, Hospital Universitario Virgen de la Victoria Málaga, Málaga, Spain

6Unidad de Salud Mental, Hospital Universitario Regional de Málaga, Instituto de Investigación Biomédica de Málaga (IBIMA), Málaga, Spain

7Departamento de Personalidad, Evaluación y Tratamientos Psicológicos, Universidad de Málaga, Málaga, Spain

8Department of Psychology and Neuroscience, Dalhousie University, Halifax, Canada

9University Children's Clinic, Otto von Geuricke University in Magdeburg, Magdeburg, Germany

Qual Life Res. 2019 Sep;28(9):2553-2563

 

Achondroplasia, as the most common form of disproportionate short stature, potentially impacts the health-related quality of life (HRQOL) and functioning of people with this condition. Because there are no psychometrically validated patient-reported outcome (PRO) condition-specific instruments for achondroplasia, this study selected and tested available generic, disease-specific and under development questionnaires for possible use in multinational clinical research.

Health-related quality of life experiences in children and adolescents born with esophageal atresia: A Swedish-German focus group study

S. Witt1, M. Dellenmark-Blom2, S.Flieder3, J. Dingemann3, K. Abrahamsson2,4, L. Jönsson2, V. Gatzinsky2, J.E. Chaplin4, B. Ure3, C. Dingemann3, M. Bullinger1, R. Sommer1,5, J.H. Quitmann1

1Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany

2Department of Pediatric Surgery, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden

3Department of Pediatric Surgery, Hannover Medical School, Auf der Bult Children's Hospital, Hannover, Germany.

4Institute of Clinical Sciences, Department of Pediatrics, Gothenburg University, The Queen Silvia Children's Hospital, Gothenburg, Sweden

5Institute for Health Services Research in Dermatology and Nursing, University Medical Center Hamburg-Eppendorf, Hamburg, Germany

Child Care Health Dev. 2019 Jan;45(1):79-88

 

Esophageal atresia (EA) is a rare malformation of the esophagus, which needs surgical treatment. Survival rates have reached 95%, but esophageal and respiratory morbidity during childhood is frequent. Child and parent perspectives and cultural and age-specific approaches are fundamental in understanding children's health-related quality of life (HRQoL) and when developing a pediatric HRQoL questionnaire. We aimed to increase the conceptual and cross-cultural understanding of condition-specific HRQoL experiences among EA children from Sweden and Germany and investigate content validity for an EA-specific HRQoL questionnaire.

Ökonomie der Wundversorgung in Dissemond

M. Augustin, R. Sommer 

J, Kröger K (Hrsg) Chronische Wunden – Diagnostik, Therapie, Versorgung, 2019, 1. Auflage.

Erste Daten und Strategien zur Entstigmatisierung

R. Sommer (2019, May)

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