Understanding Rheumatoid Arthritis-Oral Health Perceptions Around Diagnosis and the Early Disease Course: A Phenomenological Approach.

Abstract

Objectives: To explore how Dutch adults with rheumatoid arthritis (RA) perceive their oral health around the diagnostic process and the early disease course. The primary objective was to describe these perceptions in depth, and a secondary objective was to identify areas for future patient-centred research.

Methods: A phenomenological qualitative study was conducted at Reade, a specialized rheumatology clinic in Amsterdam, The Netherlands. Adults (≥ 18 years) diagnosed with RA within 5 years prior to the start of recruitment, without multimorbidity and irrespective of oral complaints, were eligible. After completing brief sociodemographic/RA and oral-care questionnaires, semi-structured interviews in Dutch (face-to-face or virtual) were conducted with a trained interviewer with lived RA experience. Data were coded inductively in ATLAS.ti using thematic analysis.

Results: Eleven adults (7 women, 4 men; median age 68 years) were interviewed. Five themes were identified: (1) fluctuating symptoms demanded continual lifestyle adjustments and, for some, financial losses from reduced work hours; (2) the diagnosis carried a wide emotional burden-humour and symptom-downplaying helped, yet most still camped with accepting the disease, its medication and side-effects; (3) relationships with healthcare professionals varied-participants adhered to rheumatologists' recommendations but followed dental advice less consistently, and they viewed dentists and hygienists as having distinct roles; (4) oral hygiene ability varied-hand- or wrist-flare ups briefly hindered routines for some, and awareness of RA-related oral health risks (e.g., temporomandibular-joint involvement) was low; and (5) tailored information linking RA and oral health was scarce, and participants preferred clear guidance from clinicians while firmly rejecting oral hygiene guidance from friends and family.

Conclusions: This exploratory study of Dutch adults with RA showed that perceptions of oral health, particularly around the diagnostic process and early disease course, highlighted five patient-centred research areas: determining the optimal timing and provider of RA-oral health information, mapping educational gaps among dental and rheumatology professionals and students, refining ergonomic toothbrush design, addressing socioeconomic barriers to dental care and validating routine TMJ screening tools. These findings may also serve as a foundation for the development of dental guidelines that reflect the patient perspective.