J Korean Acad Pediatr Dent.  2025 May;52(2):221-238. 10.5933/JKAPD.2025.52.2.221.

Assessing Dental Care Utilization Status and Caregiver Satisfaction with Dental Treatment for Pediatric Patients with Rare Diseases

• Kim YH
• Yang Y
• Shin J
• Lee J
• Kang CM

• KMID: 2567998
• DOI: http://doi.org/10.5933/JKAPD.2025.52.2.221

Abstract

This study aimed to investigate the dental utilization status, satisfaction with dental treatment, and the need for improvement among pediatric patients with rare diseases in Korea. A survey was conducted from June 2023 to May 2024 among caregivers of patients with rare diseases who visited the pediatric dentistry departments of eight dental institutions. The questionnaire for this study was divided into two sections: 126 caregivers participated in the dental utilization survey, while 91 caregivers completed the survey on satisfaction with dental treatment. Many caregivers believed that the patient’s poor oral health could impact overall health and reported positive functional and psychological changes following dental treatment. However, dental care for these patients presents challenges due to insufficient oral care information, specialized dentists, specialized dental facilities, and insurance coverage. Caregivers identified the need for an increase in specialized dental facilities as the highest priority (42.9%), with many emphasizing the necessity for expanded insurance coverage (38.9%). Notably, caregivers of patients who had undergone dental caries treatment advocated for broader insurance coverage (p = 0.0141), particularly for prosthetic (p = 0.0330) and restorative treatments (p = 0.0129). Furthermore, caregivers of patients with congenital disorders reported a significant economic burden associated with orthodontic treatment (p = 0.0405). Additionally, caregivers emphasized the need for an increase in specialized dentists (33.3%) and improved collaboration with pediatricians (25.4%). This study underscores the critical necessity for tailored policies and comprehensive support systems that reflect the current needs of the dental care system for pediatric patients with rare diseases.

Keyword

Rare disease; Dental care utilization status; Dental care satisfaction; Pediatric dentistry