To our knowledge this is the first qualitative study that examined systematically in patients with early and established RA their expectations, impact on quality of life, concerns about side effects and the management of the treatment when taking combined medication with DMARDs or DMARDs and biologics. There was no notable difference by gender, ethnicity, age and disability in patients’ accounts.
Decisions by medical staff to prescribe combined therapy, according to the patients’ understanding, were ‘the disease was not well controlled’ and ‘monotherapy was not effective enough’ were patients’ views and show the diversity of expressions used. Although the notions are related they may not mirror the medical categories used, e.g. no response, incomplete response or response to treatment.
Within our analytical framework three key messages emerged that appear relevant for clinical practice. Firstly, patients’ expectations about the combined treatment focused mainly on their physical symptoms and concerns about the side effects. Secondly, patients reported that the efficacy of the treatment and its subsequent benefit on their quality of life was mixed. A subgroup of patients on DMARD and biologic seemed to be particularly satisfied with the treatment offered and their quality of life. Finally most patients were able to manage their combined treatment at home, for some with additional electronic or memory aids in close ongoing dialogue and support from the clinic staff. This was also highlighted in the literature .
During the interviews many patients alluded to the diverse impact that RA has on their lives with its fluctuating nature. However, we decided to exclude these accounts from this paper, as published elsewhere [28, 29] and to report the key messages that emerged from the interviews.
The introduction of DMARDs when used in combination are prescribed in varying speed during consultations, depending on patients’ medical and emotional circumstances, with the need to continually modify DMARD treatment. These may result in a range of disease activity scores and influence patients’ perceptions. Moreover, intermittent gluco-corticoide treatment is often used as part of intensive combination treatment that may influence patients’ views.
One published qualitative interview study focusing on patients’ perception following commencement of anti-TNF therapy  reached similar findings, e.g. how physical functions may improve and high expectations of some patients were not always met. Given the long-term disabling effect of RA, the guidelines of National Institute for Health and Clinical Excellence (NICE)  recommended the benefits of particular combined DMARDs in early and established RA. In addition “treat to target” is now commonly recommended and its use is supported by a number of studies .
Our findings resonate broadly with the collaborative management of chronic illness model  that consists of four elements, e.g. (i) collaborative definition of problems, (ii) goal setting and planning; (iii) training and support in self-management and (iv) active and sustained follow-up. Patients’ contribution to their self-care and its medical care are clearly complementary, rather than in competition. Both parties depend on each other for reaching the goal of controlling the disease activity, joint erosion and pain, including the management of their daily activities of living and medication, within the context of patients’ lives.
What von Korff’s elements’ of care framework offer is an improvement of long-term illness in a structured and explicit way. Within the context of our study findings, three of the four aspects of the model were adhered to by staff and patients, whereas overt goal setting and planning did not receive much attention. However it has become evident from von Korff’s publications in chronic disease management that an effective collaborative care approach strengthens and supports patients’ self-care in long-term disease such as Rheumatoid Arthritis, including their family members and carers.
Strengths and limitations of the study
The qualitative methodology adopted for the data gathering has been advantageous, as patients provided first hand and detailed views what matters most to them and what they have difficulties with in relation to their combination therapy.
One limitation was that the study cohort was recruited from one large inner city outpatient clinic; where patients attend from a wide geographical area and socio-demographically diverse background, due to its tertiary status. Moreover, the findings may not be fully generalisable without replication, but they are timely and extend further knowledge of how patients’ cope and manage with an ever changing treatment approach in rheumatology care.
Finally, for reasons of lack of resources for language interpretation, we included in the study patients who could be interviewed in English, even if there use of English was limited. We estimate that fewer than 5% of all patients attending this Rheumatology clinic cannot speak English sufficiently to communicate with staff, so that in our view this inclusion criterion did not lead to substantial selection bias in the study and did lead to a representative sample of all clinic patients.