Facilitators and constraints of physical activity in adults with achondroplasia: a scoping review.

Autor: Alves, Inês^1,2 ines.alves@uevora.pt, Koromani, Fjorda³, Lemos, Carolina^2,4,5, Tavares, Sofia⁶, Fernandes, Orlando¹, Pereira, Cidália D.⁷, Castro, Maria António^7,8, Rivadeneira, Fernando³

Publikováno v: Journal of Rare Diseases. Dec2024, Vol. 3 Issue 1, p1-23. 23p.

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Understanding, Assessing and Improving Health-Related Quality of Life of Young People with Achondroplasia- A Collaboration between a Patient Organization and Academic Medicine.

Autor: Witt S; University Medical Center Hamburg-Eppendorf, Department of Medical Psychology, Martinistr. 52, 20246 Hamburg, Germany., Rohenkohl A; University Medical Center Hamburg-Eppendorf, Department of Medical Psychology, Martinistr. 52, 20246 Hamburg, Germany., Bullinger M; University Medical Center Hamburg-Eppendorf, Department of Medical Psychology, Martinistr. 52, 20246 Hamburg, Germany., Sommer R; University Medical Center Hamburg-Eppendorf, Department of Medical Psychology, Martinistr. 52, 20246 Hamburg, Germany., Kahrs S; German Association for People of Short Stature and their Families (BKMF e.V), Leinestrabe 2, 28199 Bremen, Germany., Klingebiel KH; German Association for People of Short Stature and their Families (BKMF e.V), Leinestrabe 2, 28199 Bremen, Germany., Klingebiel R; German Association for People of Short Stature and their Families (BKMF e.V), Leinestrabe 2, 28199 Bremen, Germany., Quitmann J; University Medical Center Hamburg-Eppendorf, Department of Medical Psychology, Martinistr. 52, 20246 Hamburg, Germany.

Publikováno v: Pediatric endocrinology reviews : PER [Pediatr Endocrinol Rev] 2017 Nov; Vol. 15 (Suppl 1), pp. 109-118.

[Living with achondroplasia- how do young persons with disproportional short stature rate their quality of life and which factors are associated with quality of life?].

Autor: Rohenkohl AC; 1 Institut und Poliklinik für Medizinische Psychologie, Universitätsklinikum Hamburg-Eppendorf., Sommer R; 1 Institut und Poliklinik für Medizinische Psychologie, Universitätsklinikum Hamburg-Eppendorf., Bestges S; 1 Institut und Poliklinik für Medizinische Psychologie, Universitätsklinikum Hamburg-Eppendorf., Kahrs S; 2 Bundesverband Kleinwüchsige Menschen und ihre Familien e. V., Bremen., Klingebiel KH; 2 Bundesverband Kleinwüchsige Menschen und ihre Familien e. V., Bremen., Bullinger M; 1 Institut und Poliklinik für Medizinische Psychologie, Universitätsklinikum Hamburg-Eppendorf., Quitmann J; 1 Institut und Poliklinik für Medizinische Psychologie, Universitätsklinikum Hamburg-Eppendorf.

Publikováno v: Zeitschrift fur Kinder- und Jugendpsychiatrie und Psychotherapie [Z Kinder Jugendpsychiatr Psychother] 2015 Nov; Vol. 43 (6), pp. 433-41.

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

Autor: Witt, Stefanie¹ (AUTHOR) s.witt@uke.de, Schuett, Katharina¹ (AUTHOR), Wiegand-Grefe, Silke² (AUTHOR), Boettcher, Johannes² (AUTHOR), Quitmann, Julia^1,3 (AUTHOR)

Publikováno v: Orphanet Journal of Rare Diseases. 8/11/2023, Vol. 18 Issue 1, p1-16. 16p.