Functional ability, engaging in self-care and daily interaction with others can be difficult for patients living with primary Sjögren’s syndrome (SS). Research conducted by Katie L. Hackett, BSc(Hons), MSc, PhD, Northumbria University and Newcastle upon Tyne Hospitals NHS Foundation Trust, U.K., and colleagues on behalf of the United Kingdom Primary Sjögren’s Syndrome Registry sought to uncover the key barriers and priorities to participation in daily living activities for SS patients.
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“Patients, firstly, want to be taken seriously and, secondly, want support to manage their symptoms themselves,” according to the study’s findings.1 In her work as an associate professor of occupational therapy and clinical academic occupational therapist, Dr. Hackett investigates complex interventions in chronic disease.
For the study, funded by Arthritis Research UK, the United Kingdom Occupational Therapy Research Foundation and The Constance Owens Trust, Dr. Hackett and her colleagues sought the input of SS patients, their family members and medical providers, to develop a comprehensive view of the barriers that make it difficult for SS patients to take charge of their daily lives and well-being.
Using group concept mapping, multidimensional scaling and hierarchical cluster analysis, the researchers distilled 463 ideas from study participants down to 94 statements. These statements were categorized by order of participant-noted priority: