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Oral health-related quality of life in patients with X-linked hypophosphatemia: a qualitative exploration

INTRODUCTION: X-linked hypophosphatemia (XLH) is a rare, hereditary, and lifelong phosphate-wasting disorder characterized by rickets in childhood and impaired teeth mineralization. In the oral cavity, spontaneous abscesses can often occur without any clinical signs of alteration of the causal tooth...

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Autores principales: Nguyen, Caroline, Celestin, Elisabeth, Chambolle, Delphine, Linglart, Agnès, Biosse Duplan, Martin, Chaussain, Catherine, Friedlander, Lisa
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Bioscientifica Ltd 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8859955/
https://www.ncbi.nlm.nih.gov/pubmed/34941571
http://dx.doi.org/10.1530/EC-21-0564
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author Nguyen, Caroline
Celestin, Elisabeth
Chambolle, Delphine
Linglart, Agnès
Biosse Duplan, Martin
Chaussain, Catherine
Friedlander, Lisa
author_facet Nguyen, Caroline
Celestin, Elisabeth
Chambolle, Delphine
Linglart, Agnès
Biosse Duplan, Martin
Chaussain, Catherine
Friedlander, Lisa
author_sort Nguyen, Caroline
collection PubMed
description INTRODUCTION: X-linked hypophosphatemia (XLH) is a rare, hereditary, and lifelong phosphate-wasting disorder characterized by rickets in childhood and impaired teeth mineralization. In the oral cavity, spontaneous abscesses can often occur without any clinical signs of alteration of the causal tooth. The objective of our study was to evaluate the oral care pathway and the oral health-related quality of life (OHRQoL) of patients following in an expert oral medicine department located within a Parisian hospital and working in close collaboration with an endocrinology department expert in this pathology. METHODS: This study employed a qualitative descriptive design including semi-structured interviews using guiding themes. RESULTS: Twenty-one patients were included in the study. The topics brought up exceeded the initial objectives as the patients mostly addressed the alteration of their oral health-related and general quality of life; a very chaotic oral health care pathway with oral health professionals not aware of their pathology; consequences on their social, professional, and school integration. Patients declared the importance of having a multidisciplinary team around them, including medical and dental professionals. CONCLUSIONS: The variety of manifestations in patients with XLH necessitates high coordination of multidisciplinary patient care to optimize quality of life and reduce disease burden. Oral health care pathways are very chaotic for patients who have difficulty in finding professionals with sufficient knowledge of the disease. OHRQoL is therefore diminished. This situation improves when patients enter a coordinated care network.
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spelling pubmed-88599552022-02-23 Oral health-related quality of life in patients with X-linked hypophosphatemia: a qualitative exploration Nguyen, Caroline Celestin, Elisabeth Chambolle, Delphine Linglart, Agnès Biosse Duplan, Martin Chaussain, Catherine Friedlander, Lisa Endocr Connect Research INTRODUCTION: X-linked hypophosphatemia (XLH) is a rare, hereditary, and lifelong phosphate-wasting disorder characterized by rickets in childhood and impaired teeth mineralization. In the oral cavity, spontaneous abscesses can often occur without any clinical signs of alteration of the causal tooth. The objective of our study was to evaluate the oral care pathway and the oral health-related quality of life (OHRQoL) of patients following in an expert oral medicine department located within a Parisian hospital and working in close collaboration with an endocrinology department expert in this pathology. METHODS: This study employed a qualitative descriptive design including semi-structured interviews using guiding themes. RESULTS: Twenty-one patients were included in the study. The topics brought up exceeded the initial objectives as the patients mostly addressed the alteration of their oral health-related and general quality of life; a very chaotic oral health care pathway with oral health professionals not aware of their pathology; consequences on their social, professional, and school integration. Patients declared the importance of having a multidisciplinary team around them, including medical and dental professionals. CONCLUSIONS: The variety of manifestations in patients with XLH necessitates high coordination of multidisciplinary patient care to optimize quality of life and reduce disease burden. Oral health care pathways are very chaotic for patients who have difficulty in finding professionals with sufficient knowledge of the disease. OHRQoL is therefore diminished. This situation improves when patients enter a coordinated care network. Bioscientifica Ltd 2021-12-22 /pmc/articles/PMC8859955/ /pubmed/34941571 http://dx.doi.org/10.1530/EC-21-0564 Text en © The authors https://creativecommons.org/licenses/by-nc/4.0/ This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License. (https://creativecommons.org/licenses/by-nc/4.0/)
spellingShingle Research
Nguyen, Caroline
Celestin, Elisabeth
Chambolle, Delphine
Linglart, Agnès
Biosse Duplan, Martin
Chaussain, Catherine
Friedlander, Lisa
Oral health-related quality of life in patients with X-linked hypophosphatemia: a qualitative exploration
title Oral health-related quality of life in patients with X-linked hypophosphatemia: a qualitative exploration
title_full Oral health-related quality of life in patients with X-linked hypophosphatemia: a qualitative exploration
title_fullStr Oral health-related quality of life in patients with X-linked hypophosphatemia: a qualitative exploration
title_full_unstemmed Oral health-related quality of life in patients with X-linked hypophosphatemia: a qualitative exploration
title_short Oral health-related quality of life in patients with X-linked hypophosphatemia: a qualitative exploration
title_sort oral health-related quality of life in patients with x-linked hypophosphatemia: a qualitative exploration
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8859955/
https://www.ncbi.nlm.nih.gov/pubmed/34941571
http://dx.doi.org/10.1530/EC-21-0564
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