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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

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

Topology of psoriasis in routine care: results from high-resolution analysis of 2009 patients

M Augustin1, R Sommer1, N Kirsten1, A Danckworth1, M A Radtke1, K Reich2, D Thaci3, W H Boehncke4, A Langenbruch1, U Mrowietz5

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

2Dermatologikum Berlin and SCIderm Research Institute, Hamburg, Germany

3Comprehensive Center for Inflammation Medicine, University Hospital Schleswig-Holstein, Campus Lübeck, Lübeck, Germany

4Department of Dermatology and Venereology, Geneva University Hospitals, Geneva, Switzerland

5Department of Dermatology, University Medical Center Schleswig-Holstein, Campus Kiel, Kiel, Germany

Br J Dermatol. 2019 Aug;181(2):358-365

 

Different phenotypes have been described in psoriasis. Few details are known about the topology of patients in routine care.

Objectives: To characterize the frequency and distribution of body sites affected by psoriasis in Germany.

PMID:
Epub 2019 Jan 24.30430557
DOI:
10.1111/bjd.17403

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

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.

PMID:
Epub 2019 Aug 5. 31177601
DOI:
10.1111/jdv.15734

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.

PMID:
Epub 2019 Jul 17. 30802934
DOI:
10.1111/bjd.17826

Stigmatisierungserleben bei Psoriasis – qualitative Analyse aus Sicht von Betroffenen, Angehörigen und Versorgern [Perception of stigmatization in people with psoriasis-qualitative analysis from the perspective of patients, relatives and healthcare professionals]

R Sommer1, M Augustin2, U Mrowietz3, J Topp2, I Schäfer2, R von Spreckelsen4

1Institut für Versorgungsforschung in der Dermatologie und bei Pflegeberufen (IVDP), Universitätsklinikum Hamburg-Eppendorf (UKE), Martinistr. 52, 20246, Hamburg, Deutschland. r.sommer@uke.de

2Institut für Versorgungsforschung in der Dermatologie und bei Pflegeberufen (IVDP), Universitätsklinikum Hamburg-Eppendorf (UKE), Martinistr. 52, 20246, Hamburg, Deutschland

3Klinik für Dermatologie, Allergologie und Venerologie, Universitätsklinikum Schleswig-Holstein (UKSH), Campus Kiel, Kiel, Deutschland

4Klinik für Psychotherapie und Psychosomatik, Universitätsklinikum Schleswig-Holstein (UKSH), Campus Kiel, Kiel, Deutschland

Hautarzt. 2019 Jul;70(7):520-526

 

Background: Numerous studies have shown that psoriasis is associated with severe losses in almost all dimensions of health-related quality of life. An important aspect is the stigmatization experience of those affected.

Objective: The aim of this study was to examine the perception of stigmatization from the perspective of patients, relatives and healthcare professionals using a qualitative approach.

PMID:
31134287
DOI:
10.1007/s00105-019-4411

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.

PMID:
Epub 2019 May 15. 31093848
DOI:
10.1007/s11136-019-02210-z

Gender and age significantly determine patient needs and treatment goals in psoriasis - a lesson for practice

J-T. Maul1, A. A. Navarini1, R. Sommer2, F. Anzengruber1, C. Sorbe2, U. Mrowietz3, M. Drach1, C. Blome2, W-H. Boehncke4,5, D. Thaci6, K. Reich7, R. von Kiedrowski8, A. Körber9, N. Yawalkar10, C. Mainetti11, E. Laffitte4, M. Streit12, S. Rustenbach2, C. Conrad13, L. Borradori10, M. Gilliet13, A. Cozzio14, P. Itin15, P. Häusermann15, L. E. French1, M. A. Radtke2, M. Augustin2

1Department of Dermatology, University Hospital Zurich, Zurich, Switzerland

2Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

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

4Department of Dermatology and Venereology, Geneva University Hospitals, Geneva, Switzerland

5Department of Pathology and Immunology, Geneva University Hospitals, Geneva, Switzerland

6Comprehensive Center for Inflammation Medicine, University Hospital Schleswig-Holstein, Lübeck, Germany

7Dermatologikum Berlin and SCIderm Research Institute, Hamburg, Germany

8Dermatology Practice and CMS3, Selters, Germany

9Dermatology Practice Essen, Essen, Germany

10Department of Dermatology, Inselspital, University Hospital Bern, University of Bern, Bern, Switzerland

11Department of Dermatology, Regional Hospital Bellinzona, Bellinzona, Switzerland

12Department of Dermatology, Cantonal Hospital Aarau, Aarau, Switzerland

13Department of Dermatology, University Hospital Lausanne, Lausanne, Switzerland

14Department of Dermatology, Cantonal Hospital St. Gallen, St. Gallen, Switzerland

15Department of Dermatology, University Hospital Basel, Basel, Switzerland

J Eur Acad Dermatol Venereol. 2019 Apr;33(4):700-708

 

Though patient needs are key drivers of treatment decisions, they are rarely systematically investigated in routine care.

Objective: This study aimed at analysing needs and expectations from the patient perspective in the German and Swiss psoriasis registries PsoBest and Swiss Dermatology Network of Targeted Therapies (SDNTT) with respect to treatment choice, age and gender.

PMID:
Epub 2019 Jan 15. 30388318
DOI:
10.1111/jdv.15324
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