According to Caroline Nguyen and collaborating investigators, X-linked hypophosphatemia (XLH) can commonly induce spontaneous abscesses in the oral cavity “without any clinical signs of alteration of the causal tooth.” Working with an endocrinology expert, they conducted a qualitative study on the oral health-related quality of life (HRQoL) of patients with XLH, and concluded that “the variety of manifestations in patients with XLH necessitates high coordination of multidisciplinary patient care to optimize quality of life and reduce disease burden.”
The report, published in Endocrine Connections, also posited that “oral health care pathways are very chaotic for patients who have difficulty in finding professionals with sufficient knowledge of the disease.”
A total of 21 patients were included in the study and underwent semi-structured interviews using guiding themes. Nguyen and contributors stated that the topics brought up in their interviews surpassed the initial objectives of the study’s design, as patients mostly discussed: changes in their oral and general HRQoL, difficulty in finding a health care pathway, professionals unaware of the pathology, and consequences on their social, professional, or school consequences.
In their concluding discussion, the study’s authors summarized that these factors led to diminished oral HRQoL for patients with XLH. However, they also advised that “this situation improves when patients enter a coordinated care network.”