A comparative study of quality of life of families with children born with cleft lip and/or palate before and after surgical treatment

Abstract

ObjectivesThe aim of this study was to compare the quality of life (QoL) of parents/caregivers of children with cleft lip and/or palate before and after surgical repair of an orofacial cleft.Materials and MethodsFamilies of subjects who required either primary or secondary orofacial cleft repair who satisfied the inclusion criteria were recruited. A preoperative and postoperative health-related QoL questionnaire, the ‘Impact on Family Scale’ (IOFS), was applied in order to detect the subjectively perceived QoL in the affected family before and after surgical intervention. The mean pre- and postoperative total scores were compared using paired t-test. Pre- and postoperative mean scores were also compared across the 5 domains of the IOFS.ResultsThe proportion of families whose QoL was affected before surgery was 95.7%. The domains with the greatest impact preoperatively were the financial domain and social domains. Families having children with bilateral cleft lip showed QoL effects mostly in the social domain and 'impact on sibling' domain. Postoperatively, the mean total QoL score was significantly lower than the mean preoperative QoL score, indicating significant improvement in QoL (P<0.001). The mean postoperative QoL score was also significantly lower than the mean preoperative QoL score in all domains. Only 3.2% of the families reported affectation of their QoL after surgery. The domains of mastery (61.3%) with a mean of 7.4±1.8 and finance (45.1%) with a mean score of 7.2±1.6 were those showing the greatest postoperative impact. The proportion of families whose QoL was affected by orofacial cleft was markedly different after treatment (95.7% preoperative and 3.2% postoperative).ConclusionCaring for children with orofacial clefts significantly reduces the QoL of parents/caregivers in all domains. However, surgical intervention significantly improves the QoL of the parents/caregivers of these children.

Impact of Presurgical Nasoalveolar Molding on the Parental Perceptions of Oral Health-related Quality of Life of Children with Cleft Lip and Palate

“…The role of oral health and oral function in OHRQoL is well established. [17][18][19] The fact that our study found no significant differences between the cleft and control groups in these domains is in keeping with the findings of other studies. This is attributed to the fact that while cleft lip and palate does cause dental anomalies such as missing or malformed teeth, they do not appear to affect oral health or oral function.…”

The Burden and Perceived Stress on Family Caregivers of Patients With Orofacial Cleft Deformities in The Perioperative Period of Cleft Repair

“…The different periods in cleft care, such as before or after surgery and settings of care such as home or hospital admission, may present different challenges to the caregivers and as previously hypothesized; care burden may differ along the care trajectory ( 19 ), and this was reflected in the study of Emeka et al that reported significant difference in the quality of life of family caregivers before and after cleft repair ( 20 ). The present study was carried out among family caregivers of cleft patients in the perioperative period, and this period may be associated with peculiar subjective and objective demands.…”

Correlation between quality of life and burden of family caregivers of infants with cleft lip and palate

“…The most pronounced impacts, which most affected quality of life, were in the financial and social domains. Caregivers of children with cleft lip and palate need support from society, health professionals, friends and relatives (12) .…”

“…Considering that caring for a child with cleft lip and palate can lead to a worse perception of quality of life (12) , and that the burden can negatively influence this perception, it is essential to assess the correlation between these variables. A situational analysis allows planning and implementing actions to minimize the burden, favoring the health and well-being of caregivers.…”