Background: The aim of this study was to examine the current dental care situation in Germany from the perspective of those affected by a rare disease, especially concerning their satisfaction with the German dental health care system, and thus assess the relationship between their perspective and their oral health-related quality of life (OHRQoL).
Methods: A questionnaire regarding their experiences with the dental assistance and the health care system, such as the OHIP-14, was sent to the member associations of the organization of self-help groups for rare diseases ACHSE e.V. The correlation between OHIP-14 values and patient's perspective was statistically analyzed by the non-parametric Tau de Kendall test (p < 0.05).
Results: There was a statistically significant correlation between the OHIP score and the patient's perspective regarding dental assistance and health care system (p < 0.05). For those surveyed who were satisfied with the support of the health care system, an average OHIP score of 8.54 ± 10.45 points (range: 0⁻48) was determined. The group that did not feel sufficiently supported by the health care system had an average OHIP score of 16.07 ± 13.43 points (range: 0⁻56).
Discussion: The majority of respondents with rare diseases are dissatisfied with the German health care system and its support with regard to dental care.
Keywords: NAMSE; OHIP-14; OHRQoL; oral health-related quality of life; rare diseases.