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.

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Children with orofacial clefts (OFC) at preschool ages may have to tolerate psychosocial disadvantages due to their altered speech and facial appearance probably affecting their quality of life (QoL) and family functioning. In 147 children with OFC aged between 5 and 6 years and their families, the QoL and family functioning were analyzed using the KINDL questionnaire for measuring health-related QoL in children and impact on family scale. The KINDL scores were lowest in the dimension self-esteem. In all dimensions, the KINDL scores of children were higher than those of the parents suggesting a superior QoL than the caregivers estimated (P<0.001). In affected families, the impact on family scale dimensions personal impact and impact on coping strategies were found highest. Families having children with isolated cleft lip or cleft lip and palate had higher impacts on coping strategies when compared with children having isolated cleft palate (P<0.041). The impact for siblings (P<0.02) was found highest in patients with cleft lip and palate. In all examined dimensions, children with OFC perceived a higher QoL than their caregivers expected. However, self-esteem seems to be problematic in all types of OFC and in both genders. Knowledge of potential impacts related to the type of cleft and the gender of the patient will probably facilitate health care professionals to identify children and families at high risk to experience a reduced QoL and may help to offer specific support and treatment strategies.

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