Lebensqualität junger Menschen mit Achondroplasie

Background: Little is known about the perception of health-related quality of life of short statured children, adolescents and young adults with Achondroplasia. The objective of this work: is the identification of physical and socio-emotional problems and resources of young patients with Achondroplasia. Methods: The quality of life of the 34 patients (8-28 yrs.) themselves from their own and from the perspective of 21 parents of 8-18 year old children and adolescents was examined and compared using qualitative analyses of focus group discussions. Results: A difference between the children’s and parent’s perception was shown. Patients talk about a variety of problems which have a specific impact on their quality of life. Still a lot focus on coping strategies and especially older patients were better adapted and reported less difficulties. Discussion & conclusion: The results of this study show the importance of research in this area. In particular, the socio-emotional consequences for affected families from the particular circumstances described in this project indicate a need of adequate support. Keywords: short stature, Achondroplasia, quality of life, children, adolescents, parents.