Objectives: The 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 Methods: Families 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.
Results: The 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 (<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).
Conclusion: Caring 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.
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http://dx.doi.org/10.5125/jkaoms.2017.43.4.247 | DOI Listing |
BMC Pediatr
January 2025
Research Center for Caries Prevention, Dentistry Research Institute, Tehran University of Medical Sciences, Tehran, Iran.
Background: Parents of children born with cleft lip/palate encounter numerous challenges. This study aims to provide a deeper understanding for authorities to better support these parents by exploring the views and experiences of Iranian parents raising babies with cleft lip/palate through qualitative research.
Methods: This qualitative study collected data through face-to-face, in-depth, semi-structured interviews.
Cleft Palate Craniofac J
January 2025
Division of Plastic, Maxillofacial, and Oral Surgery, Department of Surgery, Duke University Health System, Durham, NC, USA.
To evaluate the feasibility of using the National Patient-Centered Clinical Research Network (PCORnet) as a source of electronic health record (EHR) data for cleft outcomes research. Exploratory retrospective analysis of multi-year, administrative and clinical, structured data stored in PCORnet. Academic institution with an ACPA-approved cleft and craniofacial team.
View Article and Find Full Text PDFDental Press J Orthod
January 2025
Federal University of Minas Gerais, School of Dentistry, Department of Restorative Dentistry (Belo Horizonte/MG, Brazil).
Objective: To evaluate the quality of YouTube™ and TikTok™ videos as educational tools for patients with cleft lip and palate (CLP) as regards their care, and multidisciplinary treatment.
Methods: Videos were searched on YouTube™ and TikTok™ using four keywords. The reliability and quality of the first 60 videos for each keyword and platform were analyzed.
Braz Oral Res
January 2025
Pontifícia Universidade Católica de Minas Gerais - PUC Minas, School of Dentistry, Graduate Program in Dentistry, Belo Horizonte, MG, Brazil.
The aim of this cross-sectional study was to perform a three-dimensional (3D) assessment of the cranial base of patients with unilateral cleft lip and palate (UCLP). Cone-beam computed tomography (CBCT) scans of 52 UCLP patients (21 females and 31 males; mean age, 10.0 ± 2.
View Article and Find Full Text PDFChirurgie (Heidelb)
January 2025
Klinik für Mund‑, Kiefer- und Plastische Gesichtschirurgie, Zentrum für Zentrum für Lippen-Kiefer-Gaumenspalten und seltene oro-kranio-faziale Fehlbildungen, Universitätsmedizin Frankfurt, Theodor-Stern-Kai 7, 60590, Frankfurt am Main, Deutschland.
Background: Cleft lip and palate is the most frequent malformation in humans that requires surgical correction but is not primarily life-threatening. That is why in many economically not very well developed countries, special surgical care, such as for cleft lip and palate, is not guaranteed at all or is not sufficiently guaranteed, so that numerous aid organizations have been founded for over 50 years to provide help by organizing surgical aid missions. Even if this help seems primarily ethically harmless and very laudable, the lack of rules and instructions unfortunately regularly leads to the fact that legal, ethical and even medical treatment standards are often not observed to the detriment of the affected children.
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