Open Access Highly Accessed Research article

Patient experiences, attitudes and expectations towards receiving information about anti-TNF medication – “It could give me two heads and I’d still try it!”

Paul Arkell1*, Sarah Ryan1, Ann Brownfield1, Anthony Cadwgan2 and Jon Packham1

Author Affiliations

1 The Haywood Rheumatology Centre, High Lane, Burslem, Stoke-on-Trent ST6 7AG, UK

2 University Hospital North Staffordshire, Newcastle Road, Stoke-on-Trent, ST4 6QG, UK

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BMC Musculoskeletal Disorders 2013, 14:165  doi:10.1186/1471-2474-14-165

Published: 10 May 2013

Abstract

Background

Anti-tumour necrosis factor (anti-TNF) therapies are an important recent development in the treatment of autoimmune disease. Despite important side effects relating to immune suppression, there is lack of research into patient experiences, attitudes and expectations about the information they receive prior to starting anti-TNF therapy.

Methods

In May 2011 participants were purposively sampled to form two focus groups varying in age, anti-TNF agent and pre-therapy disease activity. A semi-structured topic guide was used to explore patients’ experiences regarding the information they received prior to commencing anti-TNF therapy. The focus groups were audio-taped and transcribed verbatim. Data were analysed using content analysis.

Results

Four key themes were identified.

Firstly, weighing the risks and benefits of anti-TNF therapy. However, most participants attached limited importance to side effects, saying their strong desire for RA symptom control was overriding. Two reported deliberately concealing illness in order to continue their medication.

Secondly, the desire for information. They suggested that counselling should occur at an early stage and not during a severe RA flare-up.

Thirdly, the process of starting anti-TNF. Many identified that their biggest worry was whether they would be eligible for the new medication. They remembered little about the investigations they underwent, and none said they would have objected to being tested for blood borne viruses.

Finally, the experience of being on anti-TNF. Most were positive, describing effects on quality of life as well as symptoms.

Conclusions

The use of qualitative methodology in this study has enabled an understanding of patients’ attitudes towards receiving information about anti-TNF therapy. The results may be useful to health professionals in terms of the timing and content of the information given to patients prior to commencing anti-TNF therapy.

Keywords:
Rheumatoid arthritis; Anti-TNF therapy; Health information; Patient attitudes; Counselling; HIV testing