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Living with a rare disease - experiences and needs in pediatric patients and their parents

Orphanet journal of rare diseases, 2023-08, Vol.18 (1), p.242-242, Article 242

2023

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Quality of life of children with achondroplasia and their parents - a German cross-sectional study

Orphanet journal of rare diseases, 2019-08, Vol.14 (1), p.194-194, Article 194

2019

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Caregiving burden and special needs of parents in the care of their short-statured children - a qualitative approach

Frontiers in endocrinology (Lausanne), 2023-03, Vol.14, p.1093983

2023

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Health-Related Quality of Life of Children and Adolescents With Congenital Hyperinsulinism - A Scoping Review

Frontiers in endocrinology (Lausanne), 2021-12, Vol.12, p.784932-784932

2021

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Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

Orphanet journal of rare diseases, 2021-11, Vol.16 (1), p.497-497, Article 497

2021

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Parent-child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia: a Swedish-German cross-sectional study

Orphanet journal of rare diseases, 2021-03, Vol.16 (1), p.120-120, Article 120

2021

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Health‐related quality of life and patient‐reported outcome measurements in patients with cystinosis

JIMD reports, 2023-03, Vol.64 (2), p.199-211

2023

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Factors of family impact in a Swedish-German cohort of children born with esophageal atresia

Orphanet journal of rare diseases, 2022-05, Vol.17 (1), p.207-207, Article 207

2022

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

Health and quality of life outcomes, 2019-03, Vol.17 (1), p.49-15, Article 49

2019

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Parent Perceptions of a Pretend Play Intervention for Their Children With Cancer

The Journal of Nursing Research, 2023-02, Vol.31 (1), p.e253-e253

2023

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Parent-Child Assessment of Strengths and Difficulties of German Children and Adolescents Born With Esophageal Atresia

Frontiers in pediatrics, 2021-09, Vol.9, p.723410-723410

2021

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Increased Digital Media Use in Preschool Children: Exploring the Links with Parental Stress and Their Problematic Media Use

Children (Basel), 2023-12, Vol.10 (12), p.1921

2023

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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

Frontiers in pediatrics, 2019-04, Vol.7, p.164-164

2019

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Maßnahmen für einen optimalen Zugang von Kindern mit seltenen Erkrankungen und ihrer Familien zur psychosozialen Versorgung

Die Innere Medizin, 2023-05, Vol.64 (5), p.494-499

2023

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A comprehensive systematic review of health-related quality of life measures in short stature paediatric patients

Endocrine, 2024-07

2024

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Health-Related Quality of Life, Stress, Caregiving Burden and Special Needs of Parents Caring for a Short-Statured Child—Review and Recommendations for Future Research

International journal of environmental research and public health, 2023-08, Vol.20 (16), p.6558

2023

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Lebensqualität von kleinwüchsigen Kindern und Jugendlichen und Wachstumshormontherapie

Monatsschrift Kinderheilkunde, 2024-07, Vol.172 (7), p.615-622

2024

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Lebensqualität und erlebte Belastungen von Patientinnen mit Verdacht auf eine Seltene Erkrankung – erste Erkenntnisse aus der ZSE-DUO Studie

Psychotherapie, Psychosomatik, medizinische Psychologie, 2023-01, Vol.73 (1), p.9-15

2023

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Glu: An Online Type 1 Diabetes Information Community

School of Information student research journal, 2016-06, Vol.6 (1)

Witt, Stefanie

2016

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Development and Psychometric Evaluation of the IDMUQ: A Short Measure to Assess Increased Digital Media Use in Preschool Children

Social sciences (Basel), 2024-09, Vol.13 (9), p.472

2024

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Growth hormone treatment in children with short stature: impact of the diagnosis on parents

Journal of Pediatric Endocrinology and Metabolism, 2024-04, Vol.37 (4), p.326-335

2024

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Measures for optimal access to psychosocial care of children with rare diseases and their families

Innere Medizin (Heidelberg, Germany), 2023-05, Vol.64 (5), p.494-499

2023

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Maßnahmen für einen optimalen Zugang von Kindern mit seltenen Erkrankungen und ihrer Familien zur psychosozialen Versorgung

Innere Medizin (Heidelberg, Germany), 2023-03, p.1-5

2023

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Children's psychosocial functioning and parents' quality of life in paediatric short stature: The mediating role of caregiving stress

Clinical psychology and psychotherapy, 2018-01, Vol.25 (1), p.e107-e118

2018

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Piloting and psychometric properties of a patient-reported outcome instrument for young people with achondroplasia based on the International Classification of Functioning Disability and Health: the Achondroplasia Personal Life Experience Scale (APLES)

Disability and rehabilitation, 2019-07, Vol.41 (15), p.1815-1825

2019

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Living with a rare disease - experiences and needs in pediatric patients and their parents

Quality of life of children with achondroplasia and their parents - a German cross-sectional study

Caregiving burden and special needs of parents in the care of their short-statured children - a qualitative approach

Health-Related Quality of Life of Children and Adolescents With Congenital Hyperinsulinism - A Scoping Review

Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

Parent-child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia: a Swedish-German cross-sectional study

Health‐related quality of life and patient‐reported outcome measurements in patients with cystinosis

Factors of family impact in a Swedish-German cohort of children born with esophageal atresia

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

Parent Perceptions of a Pretend Play Intervention for Their Children With Cancer

Parent-Child Assessment of Strengths and Difficulties of German Children and Adolescents Born With Esophageal Atresia

Increased Digital Media Use in Preschool Children: Exploring the Links with Parental Stress and Their Problematic Media Use

Quality of Life of Short-Statured Children Born Small for Gestational Age or Idiopathic Growth Hormone Deficiency Within 1 Year of Growth Hormone Treatment

Maßnahmen für einen optimalen Zugang von Kindern mit seltenen Erkrankungen und ihrer Familien zur psychosozialen Versorgung

A comprehensive systematic review of health-related quality of life measures in short stature paediatric patients

Health-Related Quality of Life, Stress, Caregiving Burden and Special Needs of Parents Caring for a Short-Statured Child—Review and Recommendations for Future Research

Lebensqualität von kleinwüchsigen Kindern und Jugendlichen und Wachstumshormontherapie

Lebensqualität und erlebte Belastungen von Patientinnen mit Verdacht auf eine Seltene Erkrankung – erste Erkenntnisse aus der ZSE-DUO Studie

Glu: An Online Type 1 Diabetes Information Community

Development and Psychometric Evaluation of the IDMUQ: A Short Measure to Assess Increased Digital Media Use in Preschool Children

Growth hormone treatment in children with short stature: impact of the diagnosis on parents

Measures for optimal access to psychosocial care of children with rare diseases and their families

Maßnahmen für einen optimalen Zugang von Kindern mit seltenen Erkrankungen und ihrer Familien zur psychosozialen Versorgung

Children's psychosocial functioning and parents' quality of life in paediatric short stature: The mediating role of caregiving stress

Piloting and psychometric properties of a patient-reported outcome instrument for young people with achondroplasia based on the International Classification of Functioning Disability and Health: the Achondroplasia Personal Life Experience Scale (APLES)

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