Exploring quality of life disparities among 177 families with children affected by cleft lip and/or palate: A comprehensive analysis using the Impact on Family Scale

Médard Kakule Kabuyaya,Olivier Mukuku, Jonathan M. L. Kasereka, Ahuka Onalongombe,Eshete Mekonen, Todd M. Van Ye, Paul Millican,Stanis Okitotsho Wembonyama, Severin Uwonda Akinja

Theory and Clinical Practice in Pediatrics(2024)

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摘要
Objective: This study aimed to assess the quality of life (QoL) of parents/caregivers of children with cleft lip and palate (CLP) using the Impact on Family Scale (IOFS).Methods: Families of children requiring primary or secondary CLP repair were recruited based on the inclusion criteria. The IOFS questionnaire was utilized to assess perceived QoL. Multiple logistic regression was employed to determine factors linked to impacted QoL.Results: Out of the 192 families contacted, 177 participated (92.2%). The patients had a mean age of 8.9 ± 5.4 months, with a majority of families residing in rural areas (67.2%). The questionnaires assessed QoL before surgery, revealing a mean total QoL score of 68.8 ± 19.4, with 49.7% of families experiencing affected QoL. The analysis demonstrated a significant association between the female sex of parents/caregivers and a more impacted QoL (p = 0.018), as well as between the absence of a history of CLP in the family and a more affected QoL (adjusted odds ratio = 3.0; 95% CI: 1.3 – 6.7; p = 0.008).Conclusion: Caring for a child with CLP significantly decreases parents/caregivers’ QOL in all domains. The results emphasize the significance of considering the family history of CLP and the gender of the parents in the comprehensive care of affected families.
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