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Use and perceptions of nutrition information resources in systemic sclerosis: a Scleroderma Patient-centred Intervention Network (SPIN) cohort study
N. Østbø1, E. Yakes Jimenez2, M.-E. Carrier3, L. Kwakkenbos4, B. Thombs5
- Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Quebec, Canada, and Department of Health Management and Health Economics, University of Oslo, Norway.
- Departments of Paediatrics and Internal Medicine and College of Population Health, University of New Mexico Health Sciences Center, Albuquerque, NM; and Nutrition Research Network, Academy of Nutrition and Dietetics, Chicago, IL, USA.
- Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Quebec, Canada.
- Department of Clinical Psychology, Radboud University, Nijmegen; Department of IQ Health care, Radboud University Medical Center, Nijmegen; and Department of Psychiatry, Radboud University Medical Center, Nijmegen, The Netherlands.
- Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Quebec; Department of Psychiatry, McGill University, Montreal, Quebec; Department of Epidemiology, Biostatistics and Occupational Health, McGill University, Montreal, Quebec; Department of Medicine, McGill University, Montreal, Quebec; Department of Psychology, McGill University, Montreal, Quebec; and Biomedical Ethics Unit, McGill University, Montreal, Quebec, Canada. brett.thombs@mcgill.ca
Scleroderma Patient-centred Intervention Network (SPIN) Diet and Nutrition Education Patient Advisory Team, on behalf of the SPIN Investigators
CER17150
2024 Vol.42, N°8
PI 1606, PF 1614
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PMID: 38573100 [PubMed]
Received: 19/09/2023
Accepted : 28/02/2024
In Press: 02/04/2024
Published: 14/08/2024
Abstract
OBJECTIVES:
People with systemic sclerosis (SSc) may find it challenging to obtain high-quality nutrition and diet information. Objectives were to evaluate (i) how commonly different information resources are used and (ii) perceived trustworthiness, accessibility, comprehensibility, and individualisation of resources.
METHODS:
We administered the Scleroderma Patient-centred Intervention Network Nutrition Information Resources Survey to participants in an international cohort. Participants were asked if they had used 26 informational resources in four categories, including (i) health care providers, (ii) websites or social media, (iii) print materials, and (iv) events, and to rate each resource on trustworthiness, accessibility, comprehensibility, and individualisation (0 = not at all to 10 = completely).
RESULTS:
727 participants completed the survey. Most (94%) had sought nutrition or diet information from at least one resource. The most-used category was health care providers (86%), followed by print materials (68%), websites or social media (66%), and events (43%). People who had used a resource generally rated it more favourably across all domains than those who had not. The highest-rated resources across domains were conventional health care providers (doctors, registered dieticians, nurses), SSc patient organisations, SSc support groups, and university or research institution websites.
CONCLUSIONS:
Respondents used many different diet and nutrition information resources. They preferred resources from conventional health care providers, affiliated with credible institutions (e.g., SSc patient organisations), or with personal connections (e.g., SSc support groups). Future research should address the limited evidence base on nutrition in SSc and assess the quality of information provided by different information resources.
