European Qualitative Research Project on Patient-preferred Outcomes in Early Rheumatoid Arthritis (EQPERA) : Rationale, Design and Methods of a Multi-country, Multi-center, Multi-language, Longitudinal Qualitative Study

• Background: A successful medical outcome is no guarantee for patient perception of treatment success. Unraveling the patient’s perspective on outcome preferences is therefore crucial to deliver patient-centered, high-quality chronic illness care. Furthermore, the earliest stage of a chronic disease, such as in Rheumatoid Arthritis (RA), can be considered as a critical phase in the patient pathway for achieving optimal long-term outcomes. A Belgian qualitative study provided a first glimpse on what matters most to patients with recently diagnosed RA (1). However, there was a need for an international data set to better understand this complex phenomenon being studied, and to investigate whether the Belgian findings could be transferred to contexts with different national healthcare systems, practices and values. To this end, EQPERA –European Qualitative research collaboration on Patient-preferred outcomes in Early Rheumatoid Arthritis– was founded.Objectives: The overall research objective of EQPERA is to unravel longitudinally preferences for treatment and health outcomes among patients with early RA across Belgium, the Netherlands, Sweden and Norway, placing findings in a context broader than Belgium. Furthermore, EQPERA aims to add to qualitative methodology research.Methods: EQPERA applies a qualitative, explorative, longitudinal research design, which was developed in collaboration with patient research partners and the patient perspective in mind. In each country, a purposive sample of patients with early RA will be individually interviewed between 3-6 months after start of the initial RA treatment and subsequently, the same participants will be invited to take part in a focus group about 1 year after RA treatment initiation. Interviews will be analyzed using the constant comparison method as described in Qualitative Analysis Guide of Leuven. The longitudinal analysis will be guided by Saldaña’s steps for analyzing change through time in longitudinal qualitative research. To study the multinational findings, we will carry out a meta-synthesis of all locally gathered and interpreted data. The local research teams will independently employ a qualitative study, while the project leader will monitor the research as it unfolds and evolves. Moreover, to support consistency in data collection and the inter-coder reliability across countries, we will implement a detailed research protocol, a structured cultural translation and validation process of the interview guides, data collection templates, a quality assurance reporting tool and specific training sessions.Added value: Our innovative, qualitative, longitudinal research design goes beyond the abilities of the frequently used cross-sectional designs in qualitative research. A European research context allows to uncover subtle cultural differences in patient-preferred outcomes across more or less similar organized countries. This project is thus a first step in gathering widely applicable findings in a research area where evidence-based knowledge is lacking, yet, highly needed to tailor care processes and optimize patient outcomes. Various data management strategies are applied to ensure quality and trustworthiness of our findings, and to promote a smooth European collaboration.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Health Care Service and Management, Health Policy and Services and Health Economy (hsv//eng)

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