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Orphanet J Rare Dis. 2019 Aug 9;14(1):194. doi: 10.1186/s13023-019-1171-9.

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

Author information

1
Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 | W 26, 20246, Hamburg, Germany. s.witt@uke.de.
2
University of Applied Sciences Hamburg, Alexanderstraße 1, 20099, Hamburg, Germany.
3
Institute of Medical Psychology, University of Hamburg-Eppendorf, Martinistraße 52 W26, 20246, Hamburg, Germany.
4
University Hospital Magdeburg, Leipziger Straße 44, Haus 10, 39120, Magdeburg, Germany.

Abstract

BACKGROUND:

Achondroplasia is the most common form of disproportionate short stature and might affect not only the quality of life of the affected child but also that of the parents.

OBJECTIVES:

We aimed to investigate the quality of life of children with achondroplasia from child- and parent perspective as well as the parental quality of life.

METHODS:

Forty-seven children with achondroplasia and 73 parents from a German patient organization participated. We assessed children's quality of life using the generic Peds QL 4.0™ as self-reports for children aged 8-14 and parent-reports for children aged 4-14 years. Parental quality of life we assessed using the short-form 8-questionnaire.

RESULTS:

Children with achondroplasia showed significantly lower quality of life scores compared to a healthy reference population from both the child- and parent-report (p = ≤.01), except the child-report of the emotional domain (t (46) = - 1.73, p = .09). Parents reported significantly lower mental health in comparison with a German reference population (t (72) = 5.64, p ≤ .01) but no lower physical health (t (72) = .20, p = .85). While the parental quality of life was a significant predictor of parent-reported children's quality of life (F (6,66) = 2.80, p = .02), it was not for child-reported children's quality of life (F (6,66) = .92, p = .49).

CONCLUSIONS:

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.

KEYWORDS:

Achondroplasia; Children; Parents; Quality of life; Rare diseases; Special health condition

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