The impact of patient‐perceived restricted access to anti‐TNF therapy for rheumatoid arthritis: a qualitative study

Abstract

To explore rheumatoid arthritis (RA) patients' experience of access to anti-tumour necrosis factor (anti-TNF) therapy in the UK, and of switching therapies after an initial failure. Patients were asked about their experience of accessing, receiving and discontinuing anti-TNF therapy in face-to-face indepth interviews, within the context of the larger study about treatment outcomes. Seventeen individuals with a diagnosis of RA and experience of receiving anti-TNF therapy were interviewed in one hospital trust in England. Different emotions (Theme 1) surrounded the process of accessing anti-TNF therapy: hope, desperation, apprehension, anxiety and frustration. Experience of receiving anti-TNF therapy (Theme 2) included not only positive transformation, but also fear of failure and discontinuation. The subsequent value that patients placed on anti-TNF therapy (Theme 3) included having a right to receive therapy and being lucky. These three themes were underpinned by the core category of 'willing to try anything'. Those switching therapies reported increased caution over the possibility of recurring side effects, but some suggestion of benefit. There was a perception that access to anti-TNF therapy was restricted by cost, rather than being recommended for those in clinical need. Anti-TNF therapies may have a sudden and dramatic impact on RA patients' lives that contrast with other available medications. However, the stress of the patient's journey through the need to 'qualify' for anti-TNF therapy, and the fear of failing or discontinuation of therapy, should not be underestimated by clinicians.