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SP0134 Patient's Perceptions of Remission and The Art of Conciliation
  1. M. de Wit1,2
  1. 1Standing Committee of People with Arthritis/Rheumatism in Europe (PARE), EULAR, Zurich, Switzerland
  2. 2Medical Humanities, VU University Medical Centre, Amsterdam, Netherlands

Abstract

Untill recently definitions of remission have been developed on the basis of pragmatic arguments and with the purpose to create a treatment target that is achievable in a significant number of patients. Definitions were designed using statistical analysis of existing trial data sets. Patients were not involved in this exercise. Since EULAR/ACR agreed on a preliminary definition of remission in rheumatoid arthritis (RA), it was suggested to explore whether this definition, formulated in a rather artificial algorithm, also reflects the perspective of patients. Qualitative research, carried out by members of Outcome Measures in Rheumatology (OMERACT), demonstrated that patients' view on remission is quite straight forward. In RA main characteristics are the absence of any signs and symptoms of disease activity, reduction of disease impact and going back to “normality”, a state similar to before diagnosis. The discordance between the patients' definition of remission derived from the ideal world and the researchers' pragmatic definition of remission as an achievable target is seen in other disease areas as well.

The widely accepted quantitative approaches to defining cutoffs for disease activity/remission are based on data that are limited to what has been collected in clinical trial datasets and hamper a serious dialogue between patients and physicians/researchers. Exclusively quantitative approaches can bring us to a set of variables that are most associated with change in disease status but cannot expand our understanding of remission. Patients' and physicians' perceptions of disease often do not align and there is great need to explicitly seek the patient perspective regarding the real life experience of remission. Even when the patients' perspective is available, efforts to reconcile physican and patient perspectives during consensus meetings may result in patients adjusting their views and agreeing on a definition of remission that is in accordance with contemporary treatment outcome expectations.

In this presentation we will present original data from an international qualitative research project in psoriatic arthritis. We will discuss the impact of disease duration on the opinions of patients and the value of the concept of Patient Acceptable State of Symptoms (PASS), and review evidence on patient definitions of remission in other rheumatic diseases.

Results from the international qualitative project .There were 90 participants in 16 focus groups in 6 countries. Remission was one of the themes we explored in the focus groups. There was a nuanced perception of remission of disease activity with people seeming to expect slightly different benefits from their treatment. For some remission meant the absence of symptoms, or the absence of flare, while for others remission meant complete return to normality, similar to health before diagnosis. There was even differentiation for a participant between controlled/acceptable disease status versus remission. Remission was described by patients, in its most stringent definition as complete absence of symptoms as well as any type of limitation/life impact including emotional and social life. The differences observed may be explained by personal experiences with treatment results, disease severity and access to medications.

Co-author: Ana-Maria Orbai, MD MHS, Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, USA.

Disclosure of Interest None declared

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