Care Barriers for Patients With Nonsyndromic Orofacial Clefts in Saudi Arabia: A Cross-Sectional Study

Objective: To evaluate the barriers faced by patients with nonsyndromic orofacial clefts (NSOFC) throughout their treatment course in Saudi Arabia. Design: A cross-sectional study. Setting: Eleven different governmental health care centers across Saudi Arabia. Patients: Records of pediatric patients with NSOFC. Interventions: A questionnaire with multiple validation stages was designed to assess the barriers in care of these patients through telephonic interviews with the parents or guardians of patients with NSOFC. Main Outcome Measures: We identified 3 care-barrier-related factors: (1) geographic accessibility, (2) appointment availability and accessibility, and (3) scheduling-related barriers. Results: Overall, 240 participants of both sexes, with orofacial cleft of various types and with various demographic characteristics (residence, family monthly income, and caregiver level of education) were included. The highest mean score of care barriers was reported for scheduling-related barriers. Overall, 186 individuals reported sometimes/often not receiving the required medical care for the following reasons: scheduling difficulties (89%; 37.1%), prolonged waiting room time (40%; 16.7%), and transportation difficulties (36%; 15.0%). A linear regression showed that parents cited late appointments as the main reason for patients with NSOFC not receiving adequate medical care. Care-barrier factors were significantly related to gender (P = .035), patient age (P < .001), place of residency (P < .001), and caregiver's level of education (P = .015). Conclusions: Gaps in the health care system directly related to common care barriers need to be addressed to ensure adequate care for patients with NSOFC.