Thoughts and perceptions of ankylosing spondylitis patients with regard to TNF inhibitors

The risk of infections and malignancies is the major area of concern with anti-tumor necrosis factor (anti-TNF) agents. The aim of this study was to investigate patients’ views about their treatments and the factors that influence patients’ treatment decisions concerning the use of anti-TNF-α drugs. This descriptive study was conducted in a single rheumatology unit. Patients using anti-TNF-α drugs for at least 3 months were included. Patients’ thoughts and perceptions about their treatment were evaluated using a questionnaire. A total of 101 (94.1 % male) patients were recruited. The patients described their feelings as hopeful, worried, happy, scared, desperate, and hopeless, with the order decreasing beginning with the first. Hope for healing and an expectation of increased quality of life were the most significant determinants for acceptance of treatment. After the drug information was given, patients described their feelings as follows: increase in anxiety, psychologically wearisome, and worrying about their condition worsening in the future. After anti-TNF-α treatment, patients described their experience as follows: “the most effective medicine that I have ever used,” “it saved my life,” “control procedures that were carried out before the treatment and once every 3 months after the treatment were essential,” “I feel myself safe with these controls,” and “I advised other people.” This study, to our knowledge, is the first to evaluate the attitudes of patients concerning anti-TNF-α drugs from the stage of informed consent to the post-experience stage. We found that standard consent forms caused an increase in the level of anxiety among new users of anti-TNF-α drugs, although the aim was the exact opposite. The reasons for acceptance were the hope for healing, reliance on physicians, and advice of other patients. Most patients accepted follow-up control procedures, which aimed to diagnose adverse effects early.