Background Biologic therapy represents a “unexpected” help for many rheumatic patients that have an unsatisfactory response to classical DMARDs. Frequently seen as their last chance for a normal life these drugs come with an additional package of benefits, risks and cautions. Theoretically all European patients receive from their rheumatologists similar information at the initiation of treatment but in fact this process is not unified across the EU. Recent data from USA show major gaps in patient information. In order to help European patients to receive a standardized package of information whatever is the place they start biological therapy we should determine what do our patients consider important to know related to biological therapy.
Objectives To evaluate the perceived importance from the patients' point of view of 24 aspects of biological therapy already tested in USA population.
Methods 24 aspects of biological therapy already tested in USA patients have been tested in EU in one single tertiary rheumatology unit. 54 consecutive patients received a structured questionnaire developed to capture on a four points Likert scale patients' perceived importance of each aspect. SPSS 19.0 have been used for statistical analysis.
Results Our group included 28 women and 26 males, 66.6% coming from urban areas, 79.6% having at least 12 years of formal education. Mean age was 50.69 (SD: 13.54) and mean duration of biologic therapy was 48 ( SD: 30) months. The group indicated following as the most important aspects of biological therapy: frequency of administration, the perspective of a drug free period, drug's effect on joint lesions. In the same time the least important aspects were: advantages and disadvantages of an intravenous regime, ability of patient to self-administrate the therapy, problems expected in relation with various administration routes. In the same time 40.3% declared they took the decision after a consultation with a family member and 30.6% following a discussion with a patient with similar treatment. We also evaluated how deep every of these 24 aspects have been discussed with the rheumatologists at the moment of initiation and found significant differences between what patients consider important and the attention paid by the rheumatologist to that particular aspect.
Conclusions This pilot study revealed a large difference between various aspects of biological therapy as is it perceived by the final users. In order to standardize the informed consent process across the EU it will be mandatory to understand how our patients rank these aspects.
Bolge, Susan C., Goren, Amir PhD; Brown, Duncan; Meyer, Roxanne; Ginsberg, Seth - Initiation of biologic therapy - the patient perspective - ACR Meeting 2013
Disclosure of Interest None declared