Patient experiences, attitudes and expectations towards receiving information about anti-TNF medication: a quantitative study

The objective of the study was to measure patient attitudes and experience of information received during drug counselling for rheumatoid arthritis (RA) medications. This is a cross-sectional UK postal questionnaire study. Three RA patient groups—disease-modifying antirheumatic drugs (DMARDs) only, first anti-tumour necrosis factor (anti-TNF) and failed anti-TNF—were sent postal questionnaires. Data on patient history/demographics, drug counselling experience, knowledge of drug side effects, attitudes to vaccinations, cancer screening and blood borne virus testing was collected; 264/679 (39%) patients responded (median age 65 years, 66% female, median disease duration 15 years). Drug information from rheumatology nurses, rheumatology doctors and information leaflets was most useful. Thirty-eight percent of respondents felt reassured by information received, but 37% felt more worried. Forty percent of participants were aware of important drug side effects. Although 42–65% of patients understood they should temporarily halt anti-TNF therapy with concurrent infection, 75% of patients recalled continuing therapy despite infection. Thirteen percent believed that all vaccinations (including travel vaccinations) were safe while taking anti-TNF. Uptake of UK cancer screening programmes was between 87 and 94%, except prostate screening (47%). Most participants were not aware that they may need to discontinue their anti-TNF if they developed cancer. The majority of participants felt neutral/reassured by the prospect of viral hepatitis (95%) and HIV (91%) testing. Although drug counselling is a well-established part of clinical care, there is potential for further improvement to ensure that patients’ knowledge empowers them to act safely. Particular areas for improvement included the following: patients halting DMARDs/anti-TNF therapy during infections, knowledge regarding vaccinations and prostate cancer screening uptake.