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Abstract
Purpose: Limited scleroderma is associated with significant risks to the orofacial complex. The purpose of this mixed methods study was to investigate the experiences of participants with limited scleroderma related to oral health quality of life and oral health.
Methods: A sequential mixed methods study was used in a population of individuals diagnosed with limited scleroderma. Participants were recruited through rheumatology specialists, referral, and social media; purposive sampling was used to recruit participants to be interviewed. The validated Oral Health Impact profile (OHIP) and Mouth Handicap in Systemic Sclerosis (MHISS) instruments and semi-structured interviews were used for data collection. Quantitative data were analyzed using descriptive statistics and the qualitative data were reported through thematic analysis.
Results: Forty-eight (n=48) qualifying participants participated in the quantitative phase, and 12 (n=12) participated in the qualitative phase. Based on a Likert Scale from 0-4, mean OHIP-14 scores ranged from 2.76 to 2.85, with anxiety over oral condition, embarrassed by oral problems, and oral self-consciousness having the greatest negative impact on quality of life. Mean MHISS scores ranged from 2.13 to 3.11. The highest OHRQoL scores were related to dry mouth symptoms. Factors influencing oral health-related quality of life were varied; dry mouth and microstomia were the prevalent complaints. Thematic analysis revealed challenges to oral health included self-care and professional dental care factors, both of which depended upon individual disease expression. Financial and emotional burdens also influenced participants’ oral health.
Conclusion: The oral health-related quality of life of those with limited scleroderma is impacted by multiple factors and oral health care professionals must seek out improved treatment modalities to address the needs of these vulnerable individuals. Future studies related to interprofessional collaborative care with scleroderma specialists are recommended.
- systemic scleroderma
- limited scleroderma
- CREST syndrome
- oral health-related quality of life
- autoimmune disease
- patient experience
- Received June 30, 2020.
- Accepted December 15, 2020.
- Copyright © 2021 The American Dental Hygienists’ Association
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