NEAR study: Needs and Expectations in Rheumatoid ARthritis - do we know our patients needs?

INTRODUCTION: Rheumatoid arthritis is a chronic systemic inflammatory rheumatic disease whose characteristics have a clear impact on the life of the patient and his/ her family. Doctor-patient relationship is increasingly based on communication and information transfer. In the case of chronic diseases and especially in RA, that information is fundamental for a better compliance, but also for the prevention of problems and the patient's better management of the disease on a daily basis.
OBJECTIVES: To determine in a population of RA patients which are the principal sources of information about the disease, what unmet needs exist and the level of patient involvement in therapeutic decision.
METHODS: We applied a questionnaire in person and by telephone to a population of patients with rheumatoid arthritis fulfilling the criteria of the ACR, which were followed at several departments of rheumatology in mainland Portugal, about their expectations, the degree and type of information they expected, and their unmet needs.
RESULTS: A total of 223 RA patients filled in the questionnaire, 82.5% of which were female, mean age 55.13 +/- 14.49 years and whose mean duration of disease was above 5 years in 69.5% of the individuals. Of these, 17.5% found that RA had an impact on quality of life, 15.7% felt that RA affected their ability to enjoy life and 14.3% had difficulties in performing activities of daily living. Some activities were found to be more difficult for a patient with RA (on a scale of 0 to 10), such as gardening (6.36) and practicing sports (5.79). Other basic tasks were also considered difficult, as are the case of household chores (5.76) sleeping (5.08) walking (4.99) and working (4.86). Regarding the clinical impact of RA, as expected pain is almost a universal factor (87.9%), although the majority of patients also refer arthritis (78%), pain when moving (65.5%), fatigue (60.1%) and joint deformities (58.3%) as very common symptoms. Diminishing pain (81.2%), a general improvement of symptoms (73.1%) in a lasting way (57.4%) and reducing arthritis (59.2%) appeared as the main concerns of patients with RA. Regarding quality of information, 68.2% of patients consider they are well informed about the disease, but these numbers decrease if we consider information about treatment options (46.2%), the concept of remission (20.6%) or the recognition of the DAS 28 scale (17%). As preferred sources of information about the disease, 67.7% of individuals indicate their rheumatologist, 31.4% their general practitioner, 17% the Internet and 9% the attending nurse. The same order is obtained when asked about treatment information. As to the need for additional information, the patients refer «more information about therapies/treatments» (26.9%), «new scientific developments and social support» (17.5% each), «how to improve symptoms and live better in everyday life» (16.6%). «What is the disease» (6.7%) is referred last, being that only 8.1% of patients consider they are well informed. In what concerns discussion and participation in the process of clinical decision about medication, 56.1% of patients say that they share it with their doctors during their consultation.
CONCLUSION: These results, which somewhat differ from the existing literature, demonstrate that there are important issues that should be considered in clinical practice, both relating to clinical issues and the unmet needs of our patients. We are unaware of the results coming from a treatment strategy designed to increase the RA patient's perception of their general state of health or of their perception of function. We should, however, keep in mind that pain, wellbeing and disease activity (as well as remission) should be important goals in therapeutic strategies that are to be increasingly shared with our patients.