Associations Over Time Between Fatigue, Stress, Pain, Sleep And Activities In Rheumatoid Arthritis: A Citizen Science And Experience Sampling Study

Introduction People with rheumatoid arthritis (RA) are experts in terms of living with this condition on a daily basis. Using a citizen science approach, we collaborated with people with RA to ensure that the research question matches their interests, is scientifically relevant, and that data collection is feasible. Methods The research topic, question and protocol were developed together with people with RA, using a combination of interviews, a survey, and focus groups. Fatigue and its predictive factors were identified as research topic, given its huge impact on everyday life for people with RA. In the subsequent experience sampling study, people with RA reported data on fatigue, stress, pain, sleep, rest, physical and cognitive activities on 21 consecutive days. Data was collected through an online platform and participants were able to see their own data in graphs. Multilevel linear regression modelling was performed to explore associations between stress, pain, sleep, activities and fatigue on consecutive days, between and within individuals. Results of the statistical analyses were discussed with people with RA. Results 63 participants were included (5 drop-outs; adherence = 87.9% for the 58 remaining participants). Results show a relation between fatigue on the one hand, and pain, stress, rest and sleep, but not with activity. Discussion This citizen science study provide indications for predictive factors of symptoms of fatigue in RA, which are important for treatment plans and disease management. Furthermore, the study gives an example of a citizen science approach.