Objective: Where people with systemic sclerosis (SSc) (or scleroderma) obtain diet and nutrition information to manage their disease is not known. Objectives were to identify 1) resources used by people with SSc for nutrition and diet information and 2) perceived advantages and disadvantages of resources.
Methods: We conducted nominal group technique (NGT) sessions in which people with SSc reported nutrition and diet information resources they have used and perceived advantages and disadvantages of accessing and using resources. Participants indicated whether they had tried each resource. They rated helpfulness and importance of possible advantages and disadvantages. Items elicited across sessions were merged to eliminate overlap.
Results: We conducted four NGT sessions (three English language, one French language; 15 total participants) and identified 33 unique information resources, 147 resource-specific advantages, and 118 resource-specific disadvantages. Resource categories included health care providers, alternative and complementary practitioners, websites and other media platforms, events, and print materials. The most common themes for advantages and disadvantages included quality and individualization of information and accessibility of resources in terms of cost, location, and comprehensibility. Information provided by medical professionals was regarded as most credible and can be obtained through books, articles, and websites if individual consultation is not easily accessible. Web-based information was considered highly accessible, although of variable credibility. In-person events may be an important source of health information for people with SSc.
Conclusion: People with SSc obtain nutrition and diet information from multiple resources. They seek credible and accessible resources that provide SSc-specific and individualized information.
© 2021 The Authors. ACR Open Rheumatology published by Wiley Periodicals LLC on behalf of American College of Rheumatology.