Poor oral health can worsen quality of life for people with EB: Study
Researchers call for more attentive, comprehensive dental care for patients
People with epidermolysis bullosa (EB) experience a deterioration in oral health, which is linked to poor health-related quality of life.
That’s according to a study in Germany, which also found patients with dystrophic EB had poorer oral health and worse oral health-related quality of life when compared with those with other EB types.
“Patients with EB should be given more attention, oral hygiene should be improved, and dentists’ knowledge and training should be enhanced to improve oral health and thus the [quality of life] of those affected,” researchers wrote.
The study, “Correlation between measured oral health and oral health-related quality of life in people with epidermolysis bullosa: a prospective cohort study,” was published in BMC Oral Health.
Oral health problems common in EB
EB comprises a group of rare conditions commonly caused by inherited genetic mutations. It is characterized by extremely fragile skin that blisters easily, and oral health issues, such as mouth blisters and gum inflammation.
Although many studies have investigated the quality of life of people with EB, little is known about the impact of oral health on their quality of life.
To know more, researchers in Germany used the Oral Health Impact Profile-14 (OHIP-14) questionnaire to evaluate oral health-related quality of life in a group of people with EB. Four domains were assessed: oral function, orofacial pain and appearance, and psychosocial impact, with higher values corresponding to worse quality of life.
Of the 33 people who completed the questionnaire, 18 had dystrophic EB, eight had junctional EB (JEB), and seven had EB simplex (EBS). Patients ranged in age from 18 to 71 years, and most were women (61%). They were diagnosed with EB at a mean age of 4.9 years.
Overall, patients had a mean OHIP-14 score of 18.7 out of a maximum possible value of 56. Patients with DEB had significantly higher total mean scores (25.2) compared with those with EBS (11.3) and JEB (10.6). They also had higher scores across all four domains.
In all patients, the orofacial pain domain, which assessed painful aching and discomfort while eating, was the one that had the highest impact on quality of life.
More than 39% reported frequent pain
All but one of the patients had changes in their mouth, lip, or tongue, and more than 39% reported pain several times a month. Fifteen patients with DEB and all of those with JEB had severely restricted mouth opening. Four had orthodontic treatment (use of braces to correct teeth positions), and three had removable dentures.
The researchers then calculated the Physical Oral Health Index (PhOX), an objective measure of oral health across 14 domains that include pain, abnormal sensations like tingling or numbness, teeth status, mouth opening, or saliva production. Higher PhOX scores indicate better oral health.
People with EBS had higher PhOX scores (75.4) than patients with JEB (67) and DEB (54.6). DEB participants also had the lowest scores in four PhOX domains (oral mucosa surface area, jaw size ratio, mouth-opening ability, and pain frequency).
Moreover, the researchers found there was a significant correlation between PhOX and OHIP scores, meaning poorer oral health was associated with worse oral health-related quality of life.
“The findings of this study corroborate the challenges faced by patients with EB in the oral domain and the deterioration of their [oral health-related quality of life],” the researchers wrote. “These results emphasize the necessity for dentists to engage comprehensively in disease management, encompassing routine examinations, preventive dental care and oral hygiene education.”
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