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- Van der Elst, Kristien, et al.
(författare)
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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
- 2017
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Ingår i: Annals of the Rheumatic Diseases. - London : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 76:Suppl. 2, s. 1488-1489
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Tidskriftsartikel (refereegranskat)abstract
- Background: Ample studies exist on outcome assessment from the patient perspective in Rheumatoid Arthritis (RA), but little is known about health and treatment preferences of recently diagnosed patients, and how these evolve over time. A Belgian qualitative study has set the scene (1), but knowledge on cross-cultural nuances in patient-preferred outcomes is lacking. To this end, EQPERA – European Qualitative research collaboration on Patient-preferred outcomes in Early Rheumatoid Arthritis– was founded.Objectives: EQPERA aims to unravel longitudinally preferences for treatment and health outcomes among patients with early RA across Belgium, the Netherlands and Sweden. To yield sound results, specific preparations for this cross-country qualitative study are reported here.Methods: Several steps have been undertaken to ensure trustworthiness of findings and consistency across countries in sampling, interviewing, analysis and project management: a detailed research protocol has been written; the interview guides have been translated following a structured forward-backward linguistic validation process; templates for data collection and a quality assurance reporting tool have been developed; and local staff has been trained and supervised by the project leader in implementing the study protocol. Each country will document changes with sufficient detail in their research logbook.Results: EQPERA will be a qualitative, explorative, longitudinal study with active involvement of patient researchers. In each country, a purposive sample of patients with early RA will be individually interviewed 3–6 months after start of the initial RA treatment and subsequently, the same participants will be invited back to take part in a focus group 12–18 months after RA treatment initiation. Data collection and analysis will be independently conducted by the local research teams in their native language. The local teams will analyze their interview data using the constant comparison method as detailed in Qualitative analysis guide of Leuven, after which Saldana's guiding questions will be adopted for analyzing change over time. Afterwards, a meta-synthesis of all locally gathered and interpreted data will be conducted to explore and describe patterns, similarities and differences across countries.Conclusions: This European project is a first step in gathering contextual findings on patient-preferred outcomes in early RA. Such knowledge is of crucial importance for tailoring therapeutic approaches in a timely and meaningful way. Our innovative, qualitative, longitudinal research design goes beyond the abilities of the frequently used cross-sectional designs in qualitative research. Large, multi-national qualitative projects are scarce in rheumatology research, thus applied data management and quality assurance strategies could be of interest to other researchers. © 2017, BMJ Publishing Group Limited
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| 2. |
- Van der Elst, Kristien, et al.
(författare)
-
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
- 2017
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Ingår i: European Congress of Qualitative Inquiry. ; , s. 117-117
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Konferensbidrag (refereegranskat)abstract
- 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.
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