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Ear- and hearing-related impact on quality of life in children with cleft palate : development and pretest of a health-related quality of life (HRQOL) instrument

Justine De Paepe (UGent) , Frederick Dochy (UGent) , Sara Willems (UGent) , Helen Van Hoecke (UGent) and Els De Leenheer (UGent)
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Abstract
Objectives: To investigate to what extent middle ear problems and associated hearing loss affect quality of life (QoL) of children born with a cleft palate. Methods: Fifty-five children aged between 6 and 18 years, born with non-syndromic cleft palate +/- cleft lip (CP/L) were included. A new health-related quality of life (HRQOL) questionnaire was generated with consideration of the following domains of QoL: communication, hearing loss, physical symptoms, limitation of activities and socio-emotional impact. Results: Major psychosocial problems were not reported in the majority of children as a result of their ear and hearing problems. However, according to their parents, 2 out of 3 children, had difficulty speaking clearly and understandably. These communication problems led to behavioural problems and social isolation in 1 out of 5 children. Scholastic achievement was negatively influenced by two factors: hearing loss and sleep disturbance due to ear problems. Conclusions: To our knowledge this is the first study to quantitatively measure the ear- and hearing-related impact on QoL in children born with CP/L. Large-scale, multicentre studies are needed to further research and expand on the findings of this pilot study.
Keywords
Pediatrics, Perinatology, and Child Health, Otorhinolaryngology, General Medicine, Cleft palate, Otitis media, Quality of life, Questionnaire, Children, MIDDLE-EAR, OTITIS-MEDIA, EFFUSION, LIP, PATIENT

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MLA
De Paepe, Justine, et al. “Ear- and Hearing-Related Impact on Quality of Life in Children with Cleft Palate : Development and Pretest of a Health-Related Quality of Life (HRQOL) Instrument.” INTERNATIONAL JOURNAL OF PEDIATRIC OTORHINOLARYNGOLOGY, vol. 122, 2019, pp. 35–39.
APA
De Paepe, J., Dochy, F., Willems, S., Van Hoecke, H., & De Leenheer, E. (2019). Ear- and hearing-related impact on quality of life in children with cleft palate : development and pretest of a health-related quality of life (HRQOL) instrument. INTERNATIONAL JOURNAL OF PEDIATRIC OTORHINOLARYNGOLOGY, 122, 35–39.
Chicago author-date
De Paepe, Justine, Frederick Dochy, Sara Willems, Helen Van Hoecke, and Els De Leenheer. 2019. “Ear- and Hearing-Related Impact on Quality of Life in Children with Cleft Palate : Development and Pretest of a Health-Related Quality of Life (HRQOL) Instrument.” INTERNATIONAL JOURNAL OF PEDIATRIC OTORHINOLARYNGOLOGY 122: 35–39.
Chicago author-date (all authors)
De Paepe, Justine, Frederick Dochy, Sara Willems, Helen Van Hoecke, and Els De Leenheer. 2019. “Ear- and Hearing-Related Impact on Quality of Life in Children with Cleft Palate : Development and Pretest of a Health-Related Quality of Life (HRQOL) Instrument.” INTERNATIONAL JOURNAL OF PEDIATRIC OTORHINOLARYNGOLOGY 122: 35–39.
Vancouver
1.
De Paepe J, Dochy F, Willems S, Van Hoecke H, De Leenheer E. Ear- and hearing-related impact on quality of life in children with cleft palate : development and pretest of a health-related quality of life (HRQOL) instrument. INTERNATIONAL JOURNAL OF PEDIATRIC OTORHINOLARYNGOLOGY. 2019;122:35–9.
IEEE
[1]
J. De Paepe, F. Dochy, S. Willems, H. Van Hoecke, and E. De Leenheer, “Ear- and hearing-related impact on quality of life in children with cleft palate : development and pretest of a health-related quality of life (HRQOL) instrument,” INTERNATIONAL JOURNAL OF PEDIATRIC OTORHINOLARYNGOLOGY, vol. 122, pp. 35–39, 2019.
@article{8650044,
  abstract     = {{Objectives: To investigate to what extent middle ear problems and associated hearing loss affect quality of life (QoL) of children born with a cleft palate.

Methods: Fifty-five children aged between 6 and 18 years, born with non-syndromic cleft palate +/- cleft lip (CP/L) were included. A new health-related quality of life (HRQOL) questionnaire was generated with consideration of the following domains of QoL: communication, hearing loss, physical symptoms, limitation of activities and socio-emotional impact.

Results: Major psychosocial problems were not reported in the majority of children as a result of their ear and hearing problems. However, according to their parents, 2 out of 3 children, had difficulty speaking clearly and understandably. These communication problems led to behavioural problems and social isolation in 1 out of 5 children. Scholastic achievement was negatively influenced by two factors: hearing loss and sleep disturbance due to ear problems.

Conclusions: To our knowledge this is the first study to quantitatively measure the ear- and hearing-related impact on QoL in children born with CP/L. Large-scale, multicentre studies are needed to further research and expand on the findings of this pilot study.}},
  author       = {{De Paepe, Justine and Dochy, Frederick and Willems, Sara and Van Hoecke, Helen and De Leenheer, Els}},
  issn         = {{0165-5876}},
  journal      = {{INTERNATIONAL JOURNAL OF PEDIATRIC OTORHINOLARYNGOLOGY}},
  keywords     = {{Pediatrics,Perinatology,and Child Health,Otorhinolaryngology,General Medicine,Cleft palate,Otitis media,Quality of life,Questionnaire,Children,MIDDLE-EAR,OTITIS-MEDIA,EFFUSION,LIP,PATIENT}},
  language     = {{eng}},
  pages        = {{35--39}},
  title        = {{Ear- and hearing-related impact on quality of life in children with cleft palate : development and pretest of a health-related quality of life (HRQOL) instrument}},
  url          = {{http://dx.doi.org/10.1016/j.ijporl.2019.03.023}},
  volume       = {{122}},
  year         = {{2019}},
}

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