Abstract
Sjögren's is a chronic autoimmune disease with diverse symptomatology, and varying patient satisfaction with management. Patients with chronic conditions are known to be higher users of complementary and alternative (CAM) practices, yet little information regarding extent of such use exists. This paper describes usage of CAM practices among people living with Sjögren's, encompassing visits to healthcare providers, CAM practitioners, self-administered CAM and self-help practices. We explored both purposes and perceived helpfulness of the various modalities utilised. 296 respondents completed an online survey administered through Sjögren's Research Ireland in 2023. An adapted form of the International Complementary and Alternative Medicine Questionnaire (I-CAM-Q) was utilised as the survey instrument. 88.5% of respondents had a formal diagnosis of Sjögren's. The majority (93.6%) were female, across all age groups. Over half (52%) of non-retired respondents were at least partially unable to work due to their diagnosis. Over half of all respondents (58.8%) listed at least one concomitant health problem. Most respondents (248, 83.8%) had used some form of CAM within the preceding 12 months. One-in-four had attended a CAM practitioner, most commonly chiropractors (8.4%) or acupuncturists (7.8%). Conventional healthcare and CAM providers were both consulted more commonly for management of chronic conditions or for well-being than for acute symptom management, although this was particularly stark for CAM consultations. 196 respondents (66.2%) reported use of self-administered CAM, predominantly vitamins/minerals or dietary supplements. 69.9% used various self-care practices, with the most reported being meditation, relaxation techniques and prayer. People living with Sjögren's attend both conventional healthcare providers and CAM practitioners to a high degree and use a diverse range of complementary therapies and practices. Health care professionals need to consider and discuss potential CAM use by this patient cohort and offer evidence-based patient education about therapies and practices encountered.