Quality of Life in School-Age Children With Orofacial Clefts and Their Families

Abstract

Nonsyndromic orofacial clefts might affect family functioning and probably reduce the quality of life in school-age children and their parents. One hundred seventy consecutive children with orofacial clefts between 8 and 12 years and their families were asked to answer the Impact on Family Scale and KINDL. The results were compared with the quality of life in an age- and sex-matched group of unaffected schoolchildren. One hundred thirty-two families participated in this study. Family functioning was found superior in families with children with cleft lip than in families with children with cleft palate only or cleft lip and palate. Sex had no significant influence on family functioning. The quality of life in schoolchildren with orofacial clefts was found superior to the control group. Reductions were observed in children with cleft lip and palate in the dimensions "family" and "friends," indicating problems in the social field. Boys with orofacial clefts experienced a lower quality of life than girls. Children with cleft lip and palate and cleft palate only experienced a lower quality of life than children with cleft lip. Even years after successful cleft reconstruction, coping and mastering the diagnosis of orofacial cleft is a relevant concern for affected families. Several limitations of the quality of life in schoolchildren were identified, mostly affecting their social role.

A Qualitative Study of Psychosocial Factors Affecting Expecting Mothers Who Choose to Continue a Cleft Lip and/or Palate Pregnancy to Term

“…While early detection of anomalies may provide parents the opportunity to emotionally prepare themselves for birth and related issues, detection may also trigger a significant period of distress and decisional dilemma (Askelsdóttir et al, 2008). Several investigations have addressed the impacts of postnatal management (Feragen & Borge, 2010;Hedrick, 2005), the experience of raising children with CL/P (Hunfeld, Tempels, Passchier, Hazebroek, & Tibboel, 1999;Hutchinson et al, 2011;Kramer et al, 2009), and the psychological effects of choosing to terminate a pregnancy (Davalbhakta & Hall, 2000;Gammeltoft & Nguyen, 2007). However, little research in Taiwan has addressed the psychological impact on expecting mothers of choosing to continue their pregnancies.…”

Orofacial clefts in Brazil and surgical rehabilitation under the Brazilian National Health System

“…4,5,6,7 These changes affect the health and quality of life of individuals with orofacial clefts and their families. 8 The great clinical variety of OFCs, together with their many degrees of severity and possible association with other syndromes or birth defects, results in different treatment protocols. In general, rehabilitation is a long process that includes clinical and surgical care.…”

Need for standard outcome reporting systems in craniosynostosis

“…From studies performed in children with orofacial clefting, we realize that poor oral health significantly impacts social functioning. 19 Boys with orofacial clefts experience a lower QOL than girls. Moreover, children with cleft lip and palate and those with cleft palate alone experienced a lower QOL than children with cleft lip alone.…”