Mundgesundheitsbezogene Lebensqualität bei seltenen Erkrankungen im Zusammenhang mit oralen Symptomen, Diagnoseverzögerung und Geschlecht

Bohner, Lauren; Wiemann, Sabrina; Jung, Susanne; Kleinheinz, Johannes; Hanisch, Marcel

doi:10.1007/s00103-019-03032-7

Cited by 9 publications

(8 citation statements)

References 8 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The mean time between the onset of the first symptoms to diagnosis in our study was 7.4 years. Similar results were found in a study by Bohner et al, which found that OHRQoL steadily worsened with a delay in diagnosis in a cohort of 473 individuals affected by a rare disease, with an average time of diagnosis of 8.37 years after the onset of the first symptoms [ 36 ]. Another study showed comparable results (an average of 7 years for people affected by a rare disease) [ 37 ].…”

Section: Discussionsupporting

confidence: 87%

See 1 more Smart Citation

Oral health and oral-health-related quality of life in people with X-linked hypophosphatemia

Steur,

Bohner,

Jackowski

et al. 2024

BMC Oral Health

Self Cite

View full text Add to dashboard Cite

Background X-linked hypophosphatemia (XLH) is a type of vitamin D-resistant rickets. It is the most common form of it and is related with oral health problems. This study aimed to analyze the OHRQoL of people suffering from XLH and measure physical oral health to confirm or refute evidence of reduced oral health. Methods The German version of the Oral Health Impact Profile (OHIP-14G), was used to measure OHRQoL. All study participants underwent clinical examination, and oral health was scored using the Physical Oral Health Index (PhOX). Results A total of 26 people participated in the study, of whom five were male and 21 were female. The average participant age was 40.9 ± 12.8 years. The OHIP-14G score was 14.3 (± 12.1; 95% CI: 9.37. 19.16) points (range 0–44 points). The PhOX score was 77.1 (± 9.9; 95% CI: 73.10—81.13) points (range 61–95 points). Conclusions The results of this study confirm that oral health and OHRQoL are both reduced in the studied cohort of people affected by XLH. Particular attention should be paid to perfect oral hygiene in people with XLH, as the impaired enamel mineralisation increases the risk of caries and thus also the occurrence of apical infections.

show abstract

Section: Discussionsupporting

confidence: 87%

“…Of the 26 participants, only five were men. A recent study by Bohner et al [ 36 ] found no correlation between OHRQoL and sex in patients with rare diseases. Therefore, gender imbalance should not affect the outcome of our study.…”

Section: Limitationsmentioning

confidence: 98%

Oral health and oral-health-related quality of life in people with X-linked hypophosphatemia

Steur,

Bohner,

Jackowski

et al. 2024

BMC Oral Health

Self Cite

View full text Add to dashboard Cite

show abstract

“…Within participants, there was a considerable gender imbalance, with over 80% of participants being female. However, in a cohort of participants affected by rare diseases, Bohner et al showed no impact of gender on OHRQoL [ 52 ]. In addition, the data were collected using an online questionnaire, meaning only the participants’ subjective assessments can be reported.…”

Section: Discussionmentioning

confidence: 99%

Temporomandibular disorders in individuals with Marfan syndrome: an exploratory analysis

Jenabzadeh,

Bohner,

Köppe

et al. 2024

Head Face Med

View full text Add to dashboard Cite

Background This study aims to analyze to what extent patients with Marfan syndrome (MFS) are affected by temporomandibular disorders (TMD) and its impact on oral health-related quality of life (OHRQoL). To collect data, an online questionnaire was created to recruit participants from Germany, Austria, and Switzerland through social media and support groups. The questionnaire consists of free-text questions, the German versions of the Oral Health Impact Profile (OHIP-G14), the Depression Anxiety Stress Scale (DASS), and the Graded Chronic Pain Status (GCPS). Results A total of 76 participants with diagnosed MFS were included. Of these, 65.8% showed TMD symptoms, the most common being pain or stiffness of the masticatory muscles in the jaw angle (50.0%). Only 14.5% of the participants were already diagnosed with TMD. Of the participants with an increased likelihood of a depression disorder, 76.9% showed TMD symptoms. Of those with a critical score for an anxiety disorder, 90.9% showed TMD symptoms. 73.3% of participants with TMD symptoms reached the critical score for a stress disorder. TMD symptoms were associated with a higher risk for chronic pain. In the median, participants with TMD showed statistically notably higher OHIP-G14 scores than participants without TMD (11.5 [IQR 17] vs. 1 [IQR 3] points, p ≤ 0.001). Conclusion TMD symptoms had a noticeable impact on OHRQoL in patients with MFS, i.e., chronic pain and psychological impairment. TMD seems underdiagnosed, and more research is needed to prevent the associated chronification of pain and psychological burden to improve the OHRQoL.

show abstract

“…The complexity of management for professionals in terms of oral health is multiple. On the one hand, the rarity of the disease requires the patient to organize a care network that is often complex in terms of access to competent professionals trained in the management of this disease, and on the other hand, professionals who are not trained in the phenotypic specificity of this disease may have limitations in their management and direct patients in unsatisfactory therapeutic directions [ 19 , 20 ] .…”

Section: Discussionmentioning

confidence: 99%

“…Few studies have investigated determinants of dental care use of these patients, both children and adults. These studies use quantitative methods, the main measure being standardized questionnaires [ 19 , 26 ]. These questionnaires, although very useful for guiding and highlighting certain aspects of the impact of the disease on oral quality of life, are nevertheless limited in their precision concerning the feelings and experiences expressed by the patients.…”

Section: Discussionmentioning

confidence: 99%

Determinants of dental care use in patients with rare diseases: a qualitative exploration

et al. 2023

View full text Add to dashboard Cite

Background Oral health is an inherent part of overall health as an important physiological crossroad of functions such as mastication, swallowing or phonation; and plays a central role in the life of relationships facilitating social and emotional expression.Our hypothesis was that in patients with rare diseases, access to dental care could be difficult because of the lack of professionals who know the diseases and accept to treat the patients, but also because some patients with cognitive and intellectual disabilities could not find adequate infrastructure to assist in managing their oral health. Methods This study employed a qualitative descriptive design including semi-structured interviews using guiding themes. The transcripts were reviewed to identify key themes and interviews were performed until the data were saturated and no further themes emerged. Results Twenty-nine patients from 7 to 24 years old were included in the study of which 15 patients had an intellectual delay. The results show that access to care is complicated more by aspects concerning intellectual disability than by the fact that the disease is rare. Oral disorders are also an obstacle to the maintenance of their oral health. Conclusion The oral health of patients with rare diseases, can be greatly enhanced by a pooling of knowledge between health professionals in the various sectors around the patient’s care. It is essential that this becomes a focus of national public health action that promotes transdisciplinary care for the benefit of these patients.

show abstract

Mundgesundheitsbezogene Lebensqualität bei seltenen Erkrankungen im Zusammenhang mit oralen Symptomen, Diagnoseverzögerung und Geschlecht

Cited by 9 publications

References 8 publications

Oral health and oral-health-related quality of life in people with X-linked hypophosphatemia

Oral health and oral-health-related quality of life in people with X-linked hypophosphatemia

Temporomandibular disorders in individuals with Marfan syndrome: an exploratory analysis

Determinants of dental care use in patients with rare diseases: a qualitative exploration

Contact Info

Product

Resources

About