Diet and lupus: what do the patients think?

Abstract

Objectives Cardiovascular disease (CVD) is the leading cause of mortality in patients with systemic lupus erythematosus (lupus). Therefore, using diet to control blood lipid levels and modify CVD risk could be a promising therapeutic strategy to control disease symptoms. The primary objective of this study was to learn about lupus patient experiences with diet including their opinion on considering diet as a therapeutic option. The secondary objective was to obtain this information in a cost and time effective manner. Methods A lay summary and a 15 question diet-based online survey was publicly available for 3 weeks. Social media was used to promote the survey through relevant charities, hospitals and research groups. Results 300 responses were received, 284 of whom had lupus. Patients reported that there was a lack of clinical counselling regarding diet with only 24% of patients stating that their doctor had spoken to them about diet. Despite this, 100% of patients stated that they would change their diet if they knew it would help their symptoms and 83% would take part in a future diet-based clinical trial. Text analysis of patient research suggestions identified a particular interest in using diet to treat fatigue

Erythrocyte membrane polyunsaturated fatty acid profiles are associated with systemic inflammation and fish consumption in systemic lupus erythematosus: a cross-sectional study

“…Despite a great reported eagerness to receive and follow dietary counselling, few SLE patients receive such advice. 7 This seems especially concerning, since SLE patients tend to follow an unhealthy diet. 16,17 In the present study, we focused on PUFA and assessed PUFA status by both FFQ and erythrocyte membrane PUFA composition, which arguably more accurately reflects nutritional status than FFQ due to recall errors and social desirability bias.…”

“…6 The majority of SLE patients seek self-empowerment and request counselling on dietary measures fit to reduce disease burden and damage. 7 We therefore conducted a cross-sectional study in order to substantiate associations of PUFA status and metabolism with inflammation or disease activity, and to assess which dietary habits are associated with a beneficial PUFA profile.…”

Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland

“…We appreciate that the approach promoting the survey primarily via the NIRDP may not have reached all individuals living and working with rare diseases in Northern Ireland, but it was selected as a pragmatic approach incorporating reach to more than 60 partner rare disease charities, medical professionals, patients, and carers. Social media has been used successfully to promote other health related surveys through charities and hospital groups [(44), p. 284 patient responses; (45), p. 155 responses]. Two hundred and forty individuals accessed this survey with responses demonstrating a variety of viewpoints from individuals self-selected as patients, family members of patients, carers, healthcare professionals, social support practitioners, policy makers etc.…”

Metabolomics in juvenile-onset SLE: identifying new biomarkers to predict cardiovascular risk

“…The efficacy of personalised nutritional therapy has been validated recently in patients with diabetes; high variability between post-meal glucose levels in patients was used to stratify patients for specific short-term personalised dietary interventions to manage glucose levels[52]. Dietary intervention has been shown to reduce disease activity scores in SLE patients[50, 53] and patients are very engaged with such strategies[25].…”

“…Patients were not involved with the design of the study. However, using online surveys[25] and face-to-face events[26] patients have been consulted about their experience of CVR counselling and management, the acceptability of potential therapeutic interventions and the design of future clinical trials.…”