Abstract
BACKGROUND: Cleft lip and/or palate (CLP) is the most common orofacial congenital disability, presenting significant medical, psychological, and social challenges. In Pakistan, the incidence of CLP is high, estimated at one in 523 live births, but accurate data are lacking due to the absence of a birth registry. Early diagnosis and intervention are crucial for improving outcomes. This study evaluated the impact of CLP on patients' quality of life in Karachi, comparing pre- and post-surgical phases. METHODS: A sequential exploratory quantitative-qualitative mixed-methods study was conducted at two tertiary care hospitals in Karachi. In the quantitative phase, 280 patients with CLP, either awaiting or post-surgery, completed the Oral Health Impact Profile (OHIP-14) questionnaire to assess oral health-related quality of life (OHRQoL). Based on questionnaire responses, 30 participants were purposively selected for in-depth, semi-structured interviews exploring their experiences. Quantitative data were analyzed using SPSS version 25; qualitative data were analyzed thematically. RESULTS: Quantitative findings revealed significant gender disparities in cleft types and correction status; females had a higher prevalence of unilateral cleft lip, while males had more cleft palate cases. Dental and oral health issues significantly affected daily activities, with higher impacts in cleft palate patients. OHRQoL varied by gender, cleft type, and correction status, with those post-surgery reporting poorer OHRQoL. Qualitative analysis identified six themes: Diagnosis and Early Treatment, Challenges and Impact, Postsurgical Experiences, Support Systems, Healthcare Experiences, and Future Perspectives. Inconsistencies in psychological support, accessibility and financial burdens were presented as significant issues. Sentiment analysis highlighted varied emotions, from despair to hope and gratitude. CONCLUSIONS: CLP significantly affects patients' quality of life in Karachi across multiple dimensions. Early diagnosis and surgical intervention are essential but often hindered by financial and accessibility issues. Psychological effects, including low self-esteem and social isolation, highlight the need for integrated mental health support. Family and community support are critical for patient resilience. A comprehensive approach addressing medical, psychological, social, and systemic factors is necessary to improve outcomes for individuals with CLP.