Mills Tyler J, Price Elizabeth, Aggarwal Vishal R, Del Galdo Francesco, Walker Liz
Faculty of Health Sciences, University of Hull, Hull, UK.
School of Dentistry, University of Leeds, Leeds, UK.
Rheumatol Adv Pract. 2024 Oct 3;8(4):rkae121. doi: 10.1093/rap/rkae121. eCollection 2024.
The oral healthcare challenges of people living with scleroderma are poorly understood, yet frequently reported. This mixed methods study aimed to investigate oral health and dental care challenges associated with scleroderma from the perspective of dentists, rheumatologists and patients.
Dentists, rheumatologists and scleroderma patients in the UK completed a survey about their experiences of oral health, dental care and quality of life. People with scleroderma were also interviewed. We conducted descriptive analysis of quantitative data and used thematic analysis to examine qualitative data.
A total of 95.5% of patients reported oral and dental manifestations of scleroderma (ODMS); 57.1% reported high physical impacts, 53.8% high psychological impacts and 47.7% high social impacts. Only 13% of patients were informed of ODMS at diagnosis. No dentist or rheumatologist felt fully confident in managing ODMS. The most frequent suggestion for improvement among patients and dentists was increased information for dentists. We identified three key themes: significant negative impact on quality of life, barriers to accessing dental care and characteristics of good dental care.
ODMS are prevalent issues, constituting a significant burden on quality of life. Rheumatologists should inform scleroderma patients of ODMS and embed oral health inquiries into annual reviews. Communication between medical and dental practitioners should be encouraged to facilitate early identification and management of ODMS.
硬皮病患者的口腔保健挑战鲜为人知，但却经常被报道。这项混合方法研究旨在从牙医、风湿病学家和患者的角度调查与硬皮病相关的口腔健康和牙科护理挑战。
英国的牙医、风湿病学家和硬皮病患者完成了一项关于他们口腔健康、牙科护理和生活质量经历的调查。硬皮病患者也接受了访谈。我们对定量数据进行了描述性分析，并使用主题分析来检查定性数据。
共有95.5%的患者报告了硬皮病的口腔和牙齿表现（ODMS）；57.1%报告有较高的身体影响，53.8%报告有较高的心理影响，47.7%报告有较高的社会影响。只有13%的患者在确诊时被告知有ODMS。没有牙医或风湿病学家对管理ODMS完全有信心。患者和牙医中最常见的改进建议是为牙医提供更多信息。我们确定了三个关键主题：对生活质量有重大负面影响、获得牙科护理的障碍以及良好牙科护理的特点。
ODMS是普遍存在的问题，对生活质量构成重大负担。风湿病学家应告知硬皮病患者有关ODMS的情况，并将口腔健康询问纳入年度复查中。应鼓励医疗和牙科从业者之间进行沟通，以便早期识别和管理ODMS。
