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

Stefanie WittBeate KolbJanika BloemekeKlaus MohnikeMonika BullingerJulia Quitmann
Published in: Orphanet journal of rare diseases (2019)
Achondroplasia is chronically debilitating. Thus special efforts are needed to address patients' and parent's quality of life needs. This special health condition may influence the daily life of the entire family because they have to adapt to the child's particular needs. Therefore, clinicians should not only focus on the child's quality of life but also those of the parents.
Keyphrases
  • mental health
  • end stage renal disease
  • newly diagnosed
  • ejection fraction
  • healthcare
  • public health
  • palliative care
  • prognostic factors
  • climate change