Objectives To know the sources by which patients with rheumatic diseases treated with subcutaneous (SC) biological drugs obtain information on their treatment, their satisfaction with the information received from the hospital staff and their perception of the degree of information they have.
Methods RHEU-LIFE was a survey handed by 50 rheumatologists from Spanish outpatients hospital offices to patients on SC biological drugs. They completed the survey anonymously at home and returned it by pre-paid post-mail. They selected from a list their sources of information (being able to mark all their sources), their satisfaction with the information received from the hospital staff and whether they had sought additional information in other sources.
Results The survey was handed to 1000 patients and 592 returned it (59.2%, mean age 51.7 years, 57.6% women). The source of information most frequently mentioned was the rheumatologist (table) and, infrequently, the nurse or the hospital pharmacist. 46.1% had received information on the SC biological only orally, 6.0% written and 45.2% in both ways. The percentages quite or very satisfied with the information received were 42.6% and 44.5% respectively, 10.6% felt “neither satisfied nor dissatisfied” and 2.1% and 0.2% dissatisfied or very dissatisfied. The % quite/very satisfied was higher when the information came from the rheumatologist (89.6% vs 59.6% when the rheumatologist was not mentioned as source of information, p<0.001), and also when information was given both oral and written (92.8% vs 86.1% if only oral information was given, p=0.0125). Some 45.2% had sought information on the SC biological in sources different to the hospital staff, the % being higher among younger patients (<43 years: 65.2%: 43–52 years: 51.4%, 53–61 years: 39.1%, >61 years: 20.6%, p<0.001) those with higher education level (without studies: 14.3%, primary: 31.6%, secondary: 55.6%, vocational: 59.5%, university or higher degrees: 64.9%, p<0.001), and in those treated with a first biological SC drug (49.9%, vs. 37.7% and 37.2% with a second or third or further, p=0.014).
Conclusions Patients with rheumatic diseases mention the rheumatologist as their main source of information. The % who mentioned nurses or pharmacists was low, although the latter are very frequently visited for dispensing the drug. Satisfaction with the information received was high, but clearly lower when the rheumatologist did not inform the patient. Nearly half reported having sought information in sources other than the hospital staff.
Acknowledgements Endorsed by ConArtritis (National Coordinator of Patients with Arthritis). Funded by Merck Sharp & Dohme of Spain
Disclosure of Interest None declared