Salman Aminwala Muhammad, Jaffar Abbas Zaidi Syed, Ashraf Ganatra Muhammad, Taqi Muhammad, Hamid Dania, Aminwala Zehra
Department of Community Dentistry, Dow Dental College, Dow University of Health Sciences, Karachi, Pakistan.
Department of Oral Biology & Digital Learning Centre, Dow Dental College, Dow University of Health Sciences, Karachi, 74200, Sindh, Pakistan.
BMC Oral Health. 2024 Dec 19;24(1):1509. doi: 10.1186/s12903-024-05293-4.
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.
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.
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.
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.
唇腭裂是最常见的口腔面部先天性残疾，带来了重大的医学、心理和社会挑战。在巴基斯坦，唇腭裂的发病率很高，估计每523例活产中就有1例，但由于缺乏出生登记，准确数据不足。早期诊断和干预对于改善治疗效果至关重要。本研究评估了唇腭裂对卡拉奇患者生活质量的影响，比较了手术前后阶段。
在卡拉奇的两家三级护理医院进行了一项顺序探索性定量-定性混合方法研究。在定量阶段，280例等待手术或已接受手术的唇腭裂患者完成了口腔健康影响量表（OHIP-14）问卷，以评估与口腔健康相关的生活质量（OHRQoL）。根据问卷回答，有目的地选择了30名参与者进行深入的半结构化访谈，探讨他们的经历。定量数据使用SPSS 25版进行分析；定性数据进行主题分析。
定量研究结果显示，在腭裂类型和矫正状况方面存在显著的性别差异；女性单侧唇裂的患病率较高，而男性腭裂病例更多。牙齿和口腔健康问题严重影响日常活动，对腭裂患者的影响更大。OHRQoL因性别、腭裂类型和矫正状况而异，术后患者报告的OHRQoL较差。定性分析确定了六个主题：诊断与早期治疗、挑战与影响、术后经历、支持系统、医疗经历和未来展望。心理支持的不一致、可及性和经济负担被认为是重大问题。情感分析突出了从绝望到希望和感激等各种情绪。
唇腭裂在多个维度上显著影响卡拉奇患者的生活质量。早期诊断和手术干预至关重要，但往往受到经济和可及性问题的阻碍。心理影响，包括自卑和社会孤立，凸显了综合心理健康支持的必要性。家庭和社区支持对患者的恢复力至关重要。需要一种综合方法来解决医学、心理、社会和系统因素，以改善唇腭裂患者的治疗效果。
