Blog
About

  • Record: found
  • Abstract: found
  • Article: found
Is Open Access

Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study

Read this article at

Bookmark
      There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

      Abstract

      Background: The aim of this study was to collect information on oral health-related quality of life (OHRQoL) in people with rare diseases. Methods: A questionnaire comprising free text questions and the German version of the standardized Oral Health Impact Profile-14 (OHIP-14) questionnaire on OHRQoL was developed. All participants who indicated oral symptoms in the questionnaire were included in a cluster analysis. Different cluster analyses were performed (Ward’s, k-Means) to find symptom profile groups in the data. Results: A total of 484 questionnaires with 96 rare diseases were included in the study. The most reported symptoms were anomalies of the tooth formation, dysgnathia, changes in number of the teeth, and malocclusions. The OHIP mean values of the five resulting symptom clusters ranged from 15.1 to 19.9, which is very high compared to the general population in Germany, which has a mean value of 4.09. Discussion: All investigated symptoms show a negative association with OHRQoL, but the strongest were for symptoms of the oral mucosa and periodontal diseases. All the symptoms described in this cluster analysis can lead to considerably higher mean values of the OHIP total score among people with rare disease and thus to worse OHRQoL than reported in the general population.

      Related collections

      Most cited references 38

      • Record: found
      • Abstract: found
      • Article: not found

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

      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.
        Bookmark
        • Record: found
        • Abstract: found
        • Article: found
        Is Open Access

        Inherited epidermolysis bullosa

         Jo-David Fine (2010)
        Inherited epidermolysis bullosa (EB) encompasses a number of disorders characterized by recurrent blister formation as the result of structural fragility within the skin and selected other tissues. All types and subtypes of EB are rare; the overall incidence and prevalence of the disease within the United States is approximately 19 per one million live births and 8 per one million population, respectively. Clinical manifestations range widely, from localized blistering of the hands and feet to generalized blistering of the skin and oral cavity, and injury to many internal organs. Each EB subtype is known to arise from mutations within the genes encoding for several different proteins, each of which is intimately involved in the maintenance of keratinocyte structural stability or adhesion of the keratinocyte to the underlying dermis. EB is best diagnosed and subclassified by the collective findings obtained via detailed personal and family history, in concert with the results of immunofluorescence antigenic mapping, transmission electron microscopy, and in some cases, by DNA analysis. Optimal patient management requires a multidisciplinary approach, and revolves around the protection of susceptible tissues against trauma, use of sophisticated wound care dressings, aggressive nutritional support, and early medical or surgical interventions to correct whenever possible the extracutaneous complications. Prognosis varies considerably and is based on both EB subtype and the overall health of the patient.
          Bookmark
          • Record: found
          • Abstract: found
          • Article: not found

          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.
            Bookmark

            Author and article information

            Affiliations
            [1 ]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@ 123456uni-muenster.de (S.W.); johannes.kleinheinz@ 123456ukmuenster.de (J.K.)
            [2 ]Institute of German Dentists (IDZ), Research Focus: Sociology of medicine and Health Psychology, Universitätsstraße 73, D-50931 Köln, Germany; n.frenzel@ 123456idz.institute (N.F.B.); r.jordan@ 123456idz.institute (R.A.J.)
            Author notes
            [* ]Correspondence: marcel.hanisch@ 123456ukmuenster.de ; Tel.: +49-(0)2-51/83-47002; Fax: +49-(0)2-51/83-47184
            Journal
            Int J Environ Res Public Health
            Int J Environ Res Public Health
            ijerph
            International Journal of Environmental Research and Public Health
            MDPI
            1661-7827
            1660-4601
            15 July 2018
            July 2018
            : 15
            : 7
            30011949 6068528 10.3390/ijerph15071493 ijerph-15-01493
            © 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 ( http://creativecommons.org/licenses/by/4.0/).

            Categories
            Article

            Public health

            rare diseases, quality of life, oral health, ohip-14, ohrqol, outcome, patient reported

            Comments

            Comment on this article