The patient perspective on remission in rheumatoid arthritis: ‘You've got limits, but you're back to being you again’

Abstract

ObjectivesThe aim of rheumatoid arthritis (RA) treatment is remission. As treatment should be targeted at outcomes relevant to patients, it is important to understand how patients perceive remission, and to assess whether the current definition of remission adequately reflects these perceptions. The objective of this study is to explore the patient perspective on remission in RA.MethodsNine focus-group discussions in Austria, The Netherlands and UK were conducted, including patients in American College of Rheumatology (ACR)/ European League of Rheumatology (EULAR) remission, self-declared remission and in moderate/high disease activity. Moderators employed a prespecified interview guide helped to engage patients in a discussion on their experience with remission. Inductive thematic analysis was performed within each country, and identified themes were discussed across countries.Results47 RA patients (66% women, disease duration 9 years) participated. Three major themes of patient-perceived remission emerged: (1) symptoms would either be absent or strongly reduced, (2) impact of the disease on daily life would diminish by increased independence, ability to do valued activities, improved mood and ability to cope; (3) leading to a return to normality, including work, family role and perception of others. Patients felt the concept of remission was influenced by ageing, side effects of medication, comorbidities, accrued damage to joints and disease duration. Opinions on duration of state, the role of medication and measurement instruments varied widely.ConclusionsPatients characterise remission by the absence or reduction of symptoms, but more directly by decreased daily impact of their condition and the feeling of a return to normality. The next step is to study whether an additional patient-perceived measure of remission may add value to the ACR/EULAR definition of remission.

Improving the Management of Psoriatic Arthritis and Axial Spondyloarthritis: Roundtable Discussions with Healthcare Professionals and Patients

“…However, the meaning of remission from the patient's perspective needs to be explored further as it may differ considerably from the physician's perspective. In a recent study based on nine focus-group discussions throughout Europe, patients with RA characterized remission as decreased daily impact of their condition and the feeling of return to normality [69]. In PsA, a consensus has yet to be reached on the definitions of remission or low disease activity [70,71]; until these are agreed upon and universally accepted, it will be difficult to implement such targets in clinical practice.…”

Does patients’ opinion of remission in rheumatoid arthritis overlap ultrasound “true” remission? – a pilot study

“…However, there is no consensus on the cut-off -VAS<=1 might be too restrictive and there might be discordance between patient VAS and physician VAS. Also patients' age and concurrent diseases might alter patients' opinion regarding their pain [6,8,[17][18][19][20][21]25]. The novelty of our study is the change of the inclusion criterion in the study cohort to one not quantified by a number, but by a general characterization of "return to normal" state.…”

“…Patient Reported Outcomes (PROs) were found as relevant as clinical and laboratory evaluations in disease status assessment [5,[17][18][19][20][21], adding a personal subjective touch to a scientific description of RA. A patient can clearly feel better than any index if their disease is "as good as gone".…”

“…Patients describe remission as the absence of symptoms and the feeling of the "return to normality" [17,18]. As the return to normality would be the ideal of a remission definition, it became interesting to test a feed-back strategy,and calculate clinical and US indices in RA patients feeling as close to normal as possible.…”

The optimal combination therapy for the treatment of early rheumatoid arthritis

“…Optimal treatment includes shared treatment goals between health professionals and patients [16]. Van Tuyl et al reported differences in the perspective of patients and physicians on what constitutes remission [99], and different qualitative studies in RA shed light on patients' outcome preference of establishing a normal life again [100,101]. Moreover, according to patients with early RA, the above treatment strategies should far and foremost target all aspects of normality as soon as possible, providing support for the view that time is of the essence for a wider spectrum of outcomes than just the strictly medical disease outcomes in early RA [102].…”