Warfarin is a medication that has been widely used for more than half a century, yet very few studies have explored patients’ perspective on taking warfarin. Of the small number of qualitative studies that have been done in this area, most focus primarily on barriers to warfarin use and preferences for treatment options.271-273 Bajorek et
al. conducted a series of interviews with health professionals, patients and carers to explore attitudes and identify ways to improve the management of warfarin in older patients.271 They found that patients reported a lack of information provision and
education on the role and importance of warfarin therapy. This impacted on their confidence in taking warfarin and was the foundation for the major recommendations of strategies to improve warfarin management made by the authors. Dantas et al. also conducted interviews with older patients to examine the experience and perspective of people on long-term warfarin.272 Similarly, they
found that patients reported insufficient education and information provision. During the interviews, patients also expressed a general satisfaction with their warfarin regimen, despite reporting that it impacted on their day-to-day lives. Aspects of treatment which were described as impacting on their lives included the need for regular dose adjustments, and the subsequent need for INR tests, the need to alter or monitor their diet and alcohol intake, and an increased sense of anxiety related to the risk of bleeding and drug interactions. The burden of warfarin has also been described by Wild et al.273 Participants in their study were similarly
concerned by bleeding and bruising, including the cosmetic embarrassment which may accompany bruising, the inconvenience of INR testing, travel, dietary
restrictions, drug interactions, and the time involved, particularly for employed participants.
A further study by Bajorek et al. involving patient focus groups again reiterated the experiences of patients receiving inadequate education and information.161 They
went on to discuss patients’ reactions to being on warfarin and the spectrum of experiences with warfarin that were described. Patients progressed through a ‘cycle of reactions’ regarding warfarin, describing fear, followed by acceptance, and then forms of dependence. The patients had generally had few problems with warfarin and described satisfactory experiences overall. Interestingly, the paper also raised the topic of warfarin self-management. The term was used in this context to discuss the ways in which patients described managing their warfarin, not self-management in the sense of monitoring their INR and self-adjusting their dose as is used elsewhere in this thesis and the literature. Bajorek and colleagues also described participants being quite happy to hand over the management of concomitant medication to an external party but remaining very much in control of their warfarin:
Many attached a special significance to it, developing routines or systems that
essentially provided them with a coping strategy for [managing their warfarin
therapy]. What the routine entailed was not important, as each participant
described their own individualised method, but rather that it was an intimately
understood process that empowered them to confidently manage their
warfarin.161
While this is not self-management in the sense that is generally discussed in the literature, it is an important description of the significance patients place on maintaining an element of control over their warfarin treatment. This becomes especially important when looking at the perceptions of PSM of warfarin therapy.
2.5.1Patient perceptions of self-monitoring
Self-monitoring is a term that is widely used in the literature and is probably best described by Wilde and Garvin, who suggested that the process of self-monitoring is composed of two complementary attributes: awareness of bodily symptoms, sensations, daily activities and cognitive processes; and measurements, recordings and observations that inform cognition or provide information for independent action or consultation with care providers.274 Self-monitoring is a part of managing
many chronic conditions and perhaps the most similar to the self-monitoring of warfarin therapy is blood glucose testing in diabetes. While the clinical benefits of self-monitoring in non-insulin dependent diabetes are contentious,275 patients with
both insulin-dependent and non-insulin dependent diabetes describe the advantages of self-monitoring as providing them with a sense of control, peace of mind, a sense of ‘success’ and an ability to actively manage their condition.276, 277
Much of the INR self-monitoring literature describes similar patient-centred benefits of this method of management. A number of studies have described patients expressing a strong preference for PSM compared to their usual model of care.191, 192, 278 Other studies have reported improvements in quality of life and other measures
of patient satisfaction resulting from PSM.129, 243, 245, 259, 279, 280 Anderson et al.
describes patients preferring PSM as they found the portable testing model to be more convenient and less painful than traditional laboratory monitoring.192 Patients
in this study also reported that the use of the portable monitor gave them a greater sense of involvement and control over their medical condition.192 These results
were echoed by Cromheecke et al. and Sawicki who described an independence from usual care improving both self-efficacy and patient satisfaction with anticoagulation treatment.191, 278 Other reasons proposed for the observed
from usual care,200, 279 increased personal convenience, including the ability to travel
and better organise free time,200, 245, 279, 280 and increased confidence in anticoagulant
therapy.245 These studies were primariliy of quantitative design and patient
feedback was assessed through questionnaires. They were able to provide no greater detail on aspects such as why patients preferred PSM over usual care or why they found laboratory testing inconvenient.
One qualitative study exploring patient perspectives of PSM was identified.281 This
study qualitatively analysed the content of 246 blog posts made on the internet by 108 individual patients or carers over a 10 year period. Most of the bloggers were from the USA or the UK. They identified similar patient-centred benefits to the studies described above. They reported key themes relating to patient benefits, equipment, and social issues. Patient benefits included PSM saving patients’ time, providing a level of personal control, increasing patient choice, reducing the travel and costs associated with convential INR testing, and providing peace of mind. Social issues included the pain and stress of taking warfarin and of INR testing. Despite there being advantages to using blogs for qualitative research, including the readily available and accessible information and the anonymity of participants, there are also disadvantages to this form of data.282 Disadvantages include an
inability to identify bloggers’ demographic details and to delve for deeper information on topics raised.283 These disadvantages prevented the researchers
probing more deeply to understand the reasons behind some of the views expressed in these forums. It is also likely that the views included in analyses of blog posts are those of technologically savvy patients who feel comfortable expressing their views in a public forum. Many people taking warfarin are older and, in many instances, less likely to be ready to embrace online technologies.