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

Abstract

BackgroundAnti-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.MethodsIn 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.ResultsFour 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.ConclusionsThe 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.

Experiences of mobility for people living with rheumatoid arthritis who are receiving biologic drug therapy: implications for podiatry services

“…These findings are largely consistent with Marshall et al and Arkell et al [22, 23], although they explored the effects of anti- TNFα only, rather than the wider group of biologic drugs. Unsurprisingly, the changes noted in those starting biologics were linked to perceived improvements in quality of life (QOL).…”

Being as Normal as Possible: How Young People Ages 16–25 Years Evaluate the Risks and Benefits of Treatment for Inflammatory Arthritis

“…Our study shows clearly how young people with arthritis, similarly to those with other chronic conditions aspire to live so‐called normal lives, but that both IA and its treatment present challenges to this. We recognize that young people are not alone in valuing treatments promoting “normal” life: studies of older adults with arthritis have drawn similar conclusions . However, our research suggests that the features of normal life in adolescence and early adulthood are distinct, as are the consequences of not being normal or not being perceived as normal.…”

“…While neuroscience offers plausible explanations for such a short‐term perspective, social context has been shown as important . Moreover, older adults with arthritis have been found to have a similar focus . This is not to dispute the importance of making sure that young people are well informed about risk‐benefit tradeoffs or longer‐term consequences of not taking clinically optimal medication (or not taking medication the optimal way) .…”

Patients' expectations of medicines – a review and qualitative synthesis

“…Experiences and evaluation develop over time Duration of illness influences understanding of disease and treatment effects 26,34 Past bad experiences of side-effects triggers a conscious evaluation of risks and benefits when new treatments are suggested 26 Patients are seeking to confirm and adjust expectations 26,28 One's own experiences and those of other people are used in decisions about medicines 24,25,28,29,[34][35][36] Risks and benefits are balanced by patients in a different way than by doctors 26,[29][30][31][32] 3. Negative values -dependency, criticism and social stigma…”

“…Their acceptance of risks or symptoms in relation to sideeffects and the number of aspects weighted into decisions also make patients' decision making different from that stipulated by a biomedical model of health and illness. 29,34 Aside from patients' own experiences, information from surrounding people is reported by several authors as influential on expectations. Doctors' advice 30,35 is balanced with personal and vicarious experiences, 25 whereas academics and pharmaceutical industry are seen as less reliable sources.…”