Abstract
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.
Highlights
The definition of “rare diseases” changes worldwide
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 assessing the relation between their standpoint and the oral health-related quality of life
The study was designed as an anonymous, epidemiological survey among people with rare diseases to evaluate their satisfaction with dental care in the healthcare system of the Federal Republic of Germany as well as their respective oral health-related quality of life
Summary
The definition of “rare diseases” changes worldwide. Whereas in the USA a disease is considered rare when fewer than 7.5 out of 10,000 people are affected by it, in Japan the disease is only defined as rare when it affects fewer than four out of every 10,000 people [1]. In turn, a disease is considered “rare” whether it affects fewer than five in 10,000 people [2] This definition is estimated based on the 27–36 million people who are affected by a rare disease in the European Union, of which 4 million live in Germany [3]. 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
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