IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v16y2019i11p1933-d235999.html
   My bibliography  Save this article

Self-Assessment of Oral Health-Related Quality of Life in People with Ectodermal Dysplasia in Germany

Author

Listed:
  • Marcel Hanisch

    (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)

  • Sonja Sielker

    (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)

  • Susanne Jung

    (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)

  • Johannes Kleinheinz

    (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)

  • Lauren Bohner

    (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)

Abstract

Background: Ectodermal dysplasia describes a heterogeneous group of hereditary, congenital malformations involving developmental dystrophies of ectodermal structures. The aim of this study was to analyse the oral health-related quality of life (OHRQoL) in people with ectodermal dysplasia and to evaluate the influence of different variables. Methods: The study was designed as an anonymous epidemiological survey study among people with ectodermal dysplasia to evaluate oral symptoms, satisfaction with the health system and their respective OHRQoL using the validated German version of the OHIP-14 (Oral Health Impact Profile) questionnaire. Results: When asked about oral symptoms, 110 of the participants provided responses, of which 109 (99.09%) described oral symptoms. The average age of the female participants at the time of diagnosis was 17.02 years (range: 0 to 48 years), the average age of men was 5.19 years (range: 0 to 43 years). The average OHIP-14 overall score for female participants was 12.23 points (SD: 12.39), for male participants an average OHIP score of 11.79 points was recorded (SD: 11.08 points). Difficulty in finding a dentist ( p = 0.001), and the dissatisfaction with the health system ( p = 0.007) showed a negative impact on the OHRQoL. Conclusion: People with ectodermal dysplasia rate their OHRQoL worse than is usually prevalent in the normal German population (4.09 points); women are diagnosed with “ectodermal dysplasia” later than men. Participants who reported difficulties in finding a dentist for treatment exhibited higher OHIP values. Likewise, dissatisfaction with the health system demonstrated a negative impact on the oral health-related quality of life.

Suggested Citation

  • Marcel Hanisch & Sonja Sielker & Susanne Jung & Johannes Kleinheinz & Lauren Bohner, 2019. "Self-Assessment of Oral Health-Related Quality of Life in People with Ectodermal Dysplasia in Germany," IJERPH, MDPI, vol. 16(11), pages 1-9, May.
    • Handle: RePEc:gam:jijerp:v:16:y:2019:i:11:p:1933-:d:235999
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/16/11/1933/pdf
    Download Restriction: no
    File URL: https://www.mdpi.com/1660-4601/16/11/1933/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. Marcel Hanisch & Sabrina Wiemann & Susanne Jung & Johannes Kleinheinz & Lauren Bohner, 2018. "Oral Health-Related Quality of Life in People with Rare Hereditary Connective Tissue Disorders: Marfan Syndrome," IJERPH, MDPI, vol. 15(11), pages 1-8, October.
    2. Marcel Hanisch & Sabrina Wiemann & Lauren Bohner & Johannes Kleinheinz & Susanne Jung, 2018. "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," IJERPH, MDPI, vol. 15(8), pages 1-10, August.
    3. Sabrina Wiemann & Nicolas Frenzel Baudisch & Rainer A. Jordan & Johannes Kleinheinz & Marcel Hanisch, 2018. "Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study," IJERPH, MDPI, vol. 15(7), pages 1-10, July.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Ole Oelerich & Johannes Kleinheinz & Daniel R. Reissmann & Jeanette Köppe & Marcel Hanisch, 2020. "Correlation between Oral Health-Related Quality of Life and Objectively Measured Oral Health in People with Ehlers–Danlos Syndromes," IJERPH, MDPI, vol. 17(21), pages 1-11, November.
    2. Lauren Bohner & Shankeeth Vinayahalingam & Johannes Kleinheinz & Marcel Hanisch, 2022. "Digital Implant Planning in Patients with Ectodermal Dysplasia: Clinical Report," IJERPH, MDPI, vol. 19(3), pages 1-9, January.
    3. Nils Niekamp & Johannes Kleinheinz & Daniel R. Reissmann & Lauren Bohner & Marcel Hanisch, 2020. "Subjective Oral Health-Related Quality of Life and Objective Oral Health in People with Ectodermal Dysplasia," IJERPH, MDPI, vol. 18(1), pages 1-10, December.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Flavia Rabello & Mariana Laís Silva Celestino & Natália Cristina Ruy Carneiro & Jennifer Reis-Oliveira & Heloísa Vieira Prado & Mauro Henrique Nogueira Guimarães de Abreu & Ana Cristina Borges-Oliveir, 2024. "Oral Problems in Brazilian Individuals with Rare Genetic Diseases That Affect Skeletal Development," IJERPH, MDPI, vol. 21(9), pages 1-10, September.
    2. Julius Balke & Lauren Bohner & Jeanette Köppe & Jochen Jackowski & Ole Oelerich & Marcel Hanisch, 2023. "Oral Health-Related Quality of Life in Different Subtypes of Ehlers-Danlos Syndrome," IJERPH, MDPI, vol. 20(3), pages 1-13, January.
    3. Mohammad Khursheed Alam & Ahmed Ali Alfawzan & Deepti Shrivastava & Kumar Chandan Srivastava & Haytham Jamil Alswairki & Samir Mussallam & Huda Abutayyem & Naseer Ahmed, 2022. "Oral Health Status in Marfan Syndrome: A Systematic Review and Meta-Analysis of 353 Cases," IJERPH, MDPI, vol. 19(9), pages 1-13, April.
    4. Marcel Hanisch & Sabrina Wiemann & Lauren Bohner & Johannes Kleinheinz & Susanne Jung, 2018. "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," IJERPH, MDPI, vol. 15(8), pages 1-10, August.
    5. Annemarie Kühne & Johannes Kleinheinz & Jochen Jackowski & Jeanette Köppe & Marcel Hanisch, 2020. "Study to Investigate the Knowledge of Rare Diseases among Dentists, Orthodontists, Periodontists, Oral Surgeons and Craniomaxillofacial Surgeons," IJERPH, MDPI, vol. 18(1), pages 1-15, December.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:16:y:2019:i:11:p:1933-:d:235999. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.