OBJECTIVES : In rheumatology, the attention for Patient Reported Outcomes (PROs) increases in research, but lacks real-life data. PROs may facilitate both personalised and digital care in contrast to the gold standard disease activity score (DAS). We aimed to gain insight into the burden of these patient relevant domains in Rheumatoid Arthritis (RA) patients related to DAS.

METHODS : In this cross-sectional study, real-life data were collected from electronic patient records at the outpatient rheumatology clinic of the Maasstad Hospital. DAS and ICHOM PROs (Health Assessment Questionnaire (HAQ), Functional Assessment of Chronic Illness Therapy Fatigue (FACIT-F), Numeric Rating Scale Pain (NRS), Rheumatoid Arthritis Impact of Disease questionnaire (RAID), Visual Analogue Scale General Health (EQ-5D-VAS), and Work Productivity and Activity Impairment questionnaire (WPAI)) were captured. Descriptive statistics were performed and compared to norm scores or clinically important differences from literature.

RESULTS : In 2019, 597 RA patients filled out at least one PRO of which 263 along DAS within a 6-week timespan. Overall, 68.0%, 67.0%, 59.3%, 53.3% and 51.8% patients scored an inferior health status on the HAQ, EQ-5D-VAS, NRS, FACIT-F and RAID respectively. Patients with low DAS (n=194) (threshold <3.2) scored significantly better on all PROs (P<0.0001) with clinical important differences for NRS, EQ-5D-VAS and WPAI. Nevertheless, still high percentage of these RA patients reported problems on EQ-5D-VAS (69.9%), HAQ (60.8%), FACIT-F (50.0%), NRS (46.4%) and RAID (37.1%). In patients with high DAS scores (n=69), this was more than 50% for all PROs.

CONCLUSIONS : In daily practice, most RA patients suffer from various patient relevant domains. Although patients with low DAS showed better results, still nearly half of them experienced difficulties. With the plausible advantage of PROs facilitating care at distance by digitalization we advise to develop studies that will explore PRO’s as primary treatment target, since these are outcomes that matters to the individual patient.