Background Therapies for ankylosing spondylitis (AS) have entered a new era of optimism with the advent of TNF inhibitors (TNFis), which make remission as an achievable goal for most of the patients. Overall, data obtained from the clinical trials and post-marketing suggests that TNFis appear to be safe and well tolerated. However, risk of infections and malignancies stands as the major area of concern with these agents. Such concerns led to the development of recommendations and safety regulations for the rheumatologists, while these initiatives helped little to relieve the patients’ anxiety. Indeed, “word of mouth” uncertainty regarding some of the potential side effects of these agents is a major cause of reluctance among the patients using these agents. To overcome reluctance caused by uncertainty, it is important to gain an insight about the patients’ perceptions for these agents.
Objectives To investigate the patients’ views about their treatments and the factors that influence patients’ treatment decisions in patients with AS who have been using TNFis.
Methods This descriptive study was conducted in a single rheumatology unit between September 2011 and January 2012. AS patients who had been using TNFis at least 3 months were included to the study. Demographic and clinical characteristics of patients who accepted to participate in the study were recorded. Patients’ thoughts and perceptions about their treatment were evaluated with using a standard questionnaire given to the all patients.
Results A total of 70 patients were recruited. The mean age was 35.9±7.1 (20-50) years, and 94.3% of them were male. The mean duration of illness was 8.8±5.6 (2-32) years. The mean BASDAI score was 3.2±2.3. The frequency of using etanercept, infliximab and adalimumab were 50.0%, 18.6%, and 31.4%, respectively. Patients described their feelings at the time of prescription as hopefulness (78.6%), anxiety (42.9%), fear (20%), desperate (12.9%), and hopeless (10%). The most significant determinant for acceptance of TNFis treatment was stated by patients as hope to heal (81.4%), trust in his/her physician (74.3%), recommendation by other patients (41.4%). After the information regarding TNFis were given through standard forms, patients described their feelings as, increase in anxiety (47.1%), psychologically wearisome (35.7%), and worrying to become worse in the future (28.6%). Following treatment with these agents, patients described their experience as “I recommend to other patients” (71.4%), “it saved my life” (64.3%), “I judge regulatory exams necessary” (77.1%), and “I feel secure by 3-monthly exams” (68.6%).
Conclusions This study, to our knowledge, is the first in evaluating the attitudes of patients to TNFis, starting from the stage of informed consent to the stage of post-experience. We found that standard forms of informed consent causes an increase in the level of anxiety among new users of TNFis, while they are not supposed to do so. In this regard, wording of informed consents can be re-edited in a way to increase the knowledge about these agents without increasing the level of anxiety. In patients with a high level of concern about their disease and treatment options, patient support groups may help, since most of the patients have very good experiences related with this class of drugs.
Disclosure of Interest None Declared