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      Association between Oral Health-Related Quality of Life in People with Rare Diseases and Their Satisfaction with Dental Care in the Health System of the Federal Republic of Germany

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          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.

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          Most cited references 19

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          Derivation and validation of a short-form oral health impact profile.

           Gary D Slade (1997)
          Growing recognition that quality of life is an important outcome of dental care has created a need for a range of instruments to measure oral health-related quality of life. This study aimed to derive a subset of items from the Oral Health Impact Profile (OHIP-49)-a 49-item questionnaire that measures people's perceptions of the impact of oral conditions on their well-being. Secondary analysis was conducted using data from an epidemiologic study of 1217 people aged 60+ years in South Australia. Internal reliability analysis, factor analysis and regression analysis were undertaken to derive a subset (OHIP-14) questionnaire and its validity was evaluated by assessing associations with sociodemographic and clinical oral status variables. Internal reliability of the OHIP-14 was evaluated using Cronbach's coefficient alpha. Regression analysis yielded an optimal set of 14 questions. The OHIP-14 accounted for 94% of variance in the OHIP-49; had high reliability (alpha = 0.88); contained questions from each of the seven conceptual dimensions of the OHIP-49; and had a good distribution of prevalence for individual questions. OHIP-14 scores and OHIP-49 scores displayed the same pattern of variation among sociodemographic groups of older adults. In a multivariate analysis of dentate people, eight oral status and sociodemographic variables were associated (P < 0.05) with both the OHIP-49 and the OHIP-14. While it will be important to replicate these findings in other populations, the findings suggest that the OHIP-14 has good reliability, validity and precision.
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            German short forms of the Oral Health Impact Profile.

            We report the development and psychometric evaluation of short forms of the Oral Health Impact Profile German version (OHIP-G) - an instrument to assess oral health-related quality of life (OHRQoL). A five-item short form was developed using best subset regression in 2050 subjects from a national survey. Two 14-item versions were derived from English-language short forms and a 21-item version from previous factor analytic work. A second sample from the general population (n = 163) and a sample of clinical patients with temporomandibular disorders (TMD; n = 175) were used to investigate validity and internal consistency. Test-retest reliability was evaluated in 30 prosthodontic patients before treatment. Responsiveness was assessed in 67 patients treated for their TMD pain. Associations between short form summary scores and self-report of oral health and four oral disorders in the general population and in TMD patients were interpreted as support for convergent/groups validity. The instruments' responsiveness (effect measures of 0.55-0.98), test-retest reliability (intraclass correlation coefficients: 0.72-0.87), and internal consistency (Cronbach's alpha: 0.65-0.92) were sufficient. Sufficient discriminative and evaluative psychometric properties of short forms of the OHIP-G make the instruments suitable to assess OHRQoL in cross-sectional as well as longitudinal studies.
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              Regulation (EC) No 141/2000 of the European Parliament and of the Council of 16 December 1999 on Orphan Medical Products


                Author and article information

                Int J Environ Res Public Health
                Int J Environ Res Public Health
                International Journal of Environmental Research and Public Health
                13 August 2018
                August 2018
                : 15
                : 8
                Department of Cranio-Maxillofacial Surgery, Research Unit Rare Diseases with Orofacial, Manifestations (RDOM), University Hospital Münster, Albert-Schweitzer-Campus 1, Building W 30, D-48149 Münster, Germany; s_wiem07@ (S.W.); lauren@ (L.B.); johannes.kleinheinz@ (J.K.); susanne.jung@ (S.J.)
                Author notes
                [* ]Correspondence: marcel.hanisch@ ; Tel.: +49-251-834-7002; Fax: +49-251-834-7184
                © 2018 by the authors.

                Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (


                Public health

                rare diseases, ohip-14, oral health-related quality of life, ohrqol, namse


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