The use of qualitative methodology in this study has enabled an understanding of patients’ experiences, attitudes and expectations towards receiving information about anti-TNF medication. Apprehensions about cancer were common, and many considered themselves at ongoing risk while they were taking anti-TNF. Interestingly, however, participants did not consider engagement in national cancer screening programmes as particularly important for themselves. Participants were aware of an increased risk of infection, however they were less concerned about this than cancer-risk. Most said that they considered potential drug side effects when deciding to start anti-TNF. Many, however, emphasised a far greater importance of wanting to control their RA symptoms, and very few considered declining anti-TNF. In addition, many reported that their main fear about side effects was that those side effects would result in a discontinuation of anti-TNF. Desire for information about anti-TNF varied widely, and many participants identified the need for a balance between knowing too much and too little. Many participants stated that the best time to receive information was when their RA was not actively flaring, and that it may have been useful to be given information earlier in their treatment course. Participants had anxieties relating to the process of becoming eligible for anti-TNF, and remembered hoping they would qualify. Knowledge of tests done prior to starting was generally low, and participants were open-minded about being tested for blood borne viruses including HIV.
Many authors have described how patients weigh the potential risks and benefits of different treatments, and then make a decision [11, 14]. Research involving rheumatology patients has often identified the prospect of symptom control as an important factor in a treatment decisions, and this is reflected in the present work [15, 16]. In their work on patient attitudes towards anti-TNF, Marshall et al. describe how some patients were desperate to try new treatments , and Sanderson et al. describe a key theme of patients ‘willing to try anything’ .
There has been much work into patient attitudes towards information provision, and how this relates to their preferences for involvement in decision making [17, 18]. In a study into decision making among women with RA, at the important phase of ‘knowledge acquisition’, patients want ‘ample information about the medication presented in a straightforward way’ . This appropriate information acquisition is a way for patients to reduce their anxiety, and is supported by other research on interpretation of reassurance in rheumatology clinics . It is often suggested that patients who are involved in decisions about their care are more likely to comply with medication [5–7]. However, in a study of secondary care patients, 80% of patients tend to choose a ‘collaborative’ or ‘passive’ (rather than ‘active’) role in decision making . A study on living with arthritis describes a spectrum of patient preference between taking charge and not taking charge . Our findings are in accordance with this theory, with many patients wanting only a limited amount of information. Passive decision making seemed also to be associated with trust in healthcare professionals. In their work into perspectives of patients on COBRA combination therapy in RA, Tuyl et al. identify the importance of ‘trust in [one’s] physician. This ‘reciprocal trust’, is an important theme in a study on the doctor patient relationship in rheumatic disease .
We are unaware of any previous work looking into RA patients’ preferences for the time at which they receive information regarding anti-TNF therapy. Although the most convenient and common time for this to occur in the patient pathway is when they become eligible for anti-TNF, data from this study suggest this might not be the most effective nor desirable time. At the time of starting anti-TNF patients are usually unwell, and this may have effects on their ability to receive, retain and make judgements about information. It is possible that they could benefit from gaining awareness of anti-TNF at an earlier stage.
Rather than having apprehensions about starting anti-TNF, many participants described their fear of stopping the medication, which is in accordance with findings of a previous study . We are unaware of data presented elsewhere which suggest patients may actively hide illness in order to remain on anti-TNF, and this an area that would benefit from further research.
In 2004, a study identified patients’ anxieties relating to assessment for eligibility for anti-TNF . The present study provides evidence that these still remain, and suggests that, for some, they are more important than drug side effects.
No previous studies have explored RA patient attitudes towards being tested for blood borne viruses. The majority of patients were not concerned by blood borne virus testing, which is in accordance with recent work in general practice and acute medical settings . Participants in the present study, however, were likely to be at low risk of blood borne viruses, and therefore more work to include a patient group more likely to be ‘at risk’ may be worthwhile.
The present findings represent the experiences, attitudes and perceptions of ten participants with RA regarding information provision prior to commencing anti-TNF. While this sample size would routinely be seen as adequate for this type of qualitative research, incorporating the opinions from a wider spectrum of people may have generated more themes. All participants were under the care of a single rheumatology centre, and experience of information received at other sites may be different. All participants were successfully established on anti-TNF therapy and the experience of individuals who have discontinued the medication may be different, potentially with less willingness to trade risk of adverse reaction for potential symptomatic relief, and a desire for more information about new medications.”
As participants had been taking anti-TNF for some considerable time their experiences may be affected by recall bias. It is possible they did not accurately recall the information they received or what form it was in. Importantly there was also potential for participants to confuse information relating to anti-TNF with information from previous counselling sessions for other rheumatoid arthritis medications over the years. However, the richness of the data would suggest that the commencement of anti-TNF was a major event for the participants and they could recall their attitudes and experiences with relative ease and in-depth. Other sources of potential bias were reduced through the involvement of a patient partner to inform the development of the topic guide and the validation of the data by two researchers and the participants.