Quality of life of children with achondroplasia and their parents - a German cross-sectional study
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...
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| Format: | Article |
| Language: | English |
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BMC
2019-08-01
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| Series: | Orphanet Journal of Rare Diseases |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s13023-019-1171-9 |
| _version_ | 1818294579351257088 |
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| author | Stefanie Witt Beate Kolb Janika Bloemeke Klaus Mohnike Monika Bullinger Julia Quitmann |
| author_facet | Stefanie Witt Beate Kolb Janika Bloemeke Klaus Mohnike Monika Bullinger Julia Quitmann |
| author_sort | Stefanie Witt |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-13T03:33:59Z |
| format | Article |
| id | doaj.art-2c4f4c68d9a946469bfef54f944f96a4 |
| institution | Directory Open Access Journal |
| issn | 1750-1172 |
| language | English |
| last_indexed | 2024-12-13T03:33:59Z |
| publishDate | 2019-08-01 |
| publisher | BMC |
| record_format | Article |
| series | Orphanet Journal of Rare Diseases |
| spelling | doaj.art-2c4f4c68d9a946469bfef54f944f96a42022-12-22T00:01:05ZengBMCOrphanet Journal of Rare Diseases1750-11722019-08-011411910.1186/s13023-019-1171-9Quality of life of children with achondroplasia and their parents - a German cross-sectional studyStefanie Witt0Beate Kolb1Janika Bloemeke2Klaus Mohnike3Monika Bullinger4Julia Quitmann5Department of Medical Psychology, University Medical Center Hamburg-EppendorfUniversity of Applied Sciences HamburgInstitute of Medical Psychology, University of Hamburg-EppendorfUniversity Hospital MagdeburgInstitute of Medical Psychology, University of Hamburg-EppendorfInstitute of Medical Psychology, University of Hamburg-EppendorfAbstract 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.http://link.springer.com/article/10.1186/s13023-019-1171-9Quality of lifeAchondroplasiaChildrenParentsRare diseasesSpecial health condition |
| spellingShingle | Stefanie Witt Beate Kolb Janika Bloemeke Klaus Mohnike Monika Bullinger Julia Quitmann Quality of life of children with achondroplasia and their parents - a German cross-sectional study Orphanet Journal of Rare Diseases Quality of life Achondroplasia Children Parents Rare diseases Special health condition |
| title | Quality of life of children with achondroplasia and their parents - a German cross-sectional study |
| title_full | Quality of life of children with achondroplasia and their parents - a German cross-sectional study |
| title_fullStr | Quality of life of children with achondroplasia and their parents - a German cross-sectional study |
| title_full_unstemmed | Quality of life of children with achondroplasia and their parents - a German cross-sectional study |
| title_short | Quality of life of children with achondroplasia and their parents - a German cross-sectional study |
| title_sort | quality of life of children with achondroplasia and their parents a german cross sectional study |
| topic | Quality of life Achondroplasia Children Parents Rare diseases Special health condition |
| url | http://link.springer.com/article/10.1186/s13023-019-1171-9 |
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