What do patients prefer? A multinational, longitudinal, qualitative study on patient-preferred treatment outcomes in early rheumatoid arthritis

Kristien Van der Elst, Elke G E Mathijssen, Ellen Landgren, Ann Bremander, An De Groef, Elisabet Lindqvist, Maria Nylander, Alma Peters, Frank Van den Hoogen, Yvonne van Eijk-Hustings, Gerard Verhoeven, Johanna E Vriezekolk, Rene Westhovens, Ingrid Larsson, Kristien Van der Elst, Elke G E Mathijssen, Ellen Landgren, Ann Bremander, An De Groef, Elisabet Lindqvist, Maria Nylander, Alma Peters, Frank Van den Hoogen, Yvonne van Eijk-Hustings, Gerard Verhoeven, Johanna E Vriezekolk, Rene Westhovens, Ingrid Larsson

Abstract

Objectives: To explore treatment outcomes preferred by patients with early rheumatoid arthritis (RA) and how these change throughout the early disease stage across three European countries.

Methods: A longitudinal, qualitative, multicentre study was conducted in Belgium, the Netherlands and Sweden. 80 patients with early RA were individually interviewed 3-9 months after treatment initiation and 51 of them participated again in either a focus group or an individual interview 12-21 months after treatment initiation. Data were first analysed by country, following the Qualitative Analysis Guide of Leuven (QUAGOL). Thereafter, a meta-synthesis, inspired by the principles of meta-ethnography and the QUAGOL, was performed, involving the local research teams.

Results: The meta-synthesis revealed 11 subthemes from which four main themes were identified: disease control, physical performance, self-accomplishment and well-being. 'A normal life despite RA' was an overarching patient-preferred outcome across countries. Belgian, Dutch and Swedish patients showed many similarities in terms of which outcomes they preferred throughout the early stage of RA. Some outcome preferences (eg, relief of fatigue and no side effects) developed differently over time across countries.

Conclusions: This study on patient-preferred outcomes in early RA revealed that patients essentially want to live a normal life despite RA. Our findings help to understand what really matters to patients and provide specific insights into the early stage of RA, which should be addressed by clinicians of different disciplines from the start of treatment onwards.

Keywords: Arthritis; Health Care; Outcome and Process Assessment; Qualitative research; Rheumatoid.

Conflict of interest statement

Competing interests: None declared.

© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Figures

Figure 1
Figure 1
Overview of the study design. t, time point.
Figure 2
Figure 2
A multinational perspective on patient-preferred treatment outcomes in early rheumatoid arthritis (RA), including an overarching theme, 4 main themes and 11 subthemes.

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