| 1. |
- Bennett, Sarah E., et al.
(författare)
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Assessing acceptability and identifying barriers and facilitators to implementation of the EULAR recommendations for patient education in inflammatory arthritis : a mixed-methods study with rheumatology professionals in 23 European and Asian countries
- 2022
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Ingår i: Annals of the Rheumatic Diseases. - : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 81:10, s. 1348-1357
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To disseminate and assess the level of acceptability and applicability of the European Alliance of Associations for Rheumatology (EULAR) recommendations for patient education among professionals in rheumatology across Europe and three Asian countries and identify potential barriers and facilitators to their application. Methods: A parallel convergent mixed-methods design with an inductive approach was used. A web-based survey, available in 20 different languages, was distributed to health professionals by non-probability sampling. The level of agreement and applicability of each recommendation was assessed by (0-10) rating scales. Barriers and facilitators to implementation were assessed using free-text responses. Quantitative data were analysed descriptively and qualitative data by content analysis and presented in 16 categories supported by quotes. Results: A total of 1159 completed the survey; 852 (73.5%) were women. Most of the professionals were nurses (n=487), rheumatologists (n=320), physiotherapists (n=158). For all recommendations, the level of agreement was high but applicability was lower. The four most common barriers to application were lack of time, lack of training in how to provide patient education, not having enough staff to perform this task and lack of evaluation tools. The most common facilitators were tailoring patient education to individual patients, using group education, linking patient education with diagnosis and treatment and inviting patients to provide feedback on patient education delivery.Conclusions: This project has disseminated the EULAR recommendations for patient education to health professionals across 23 countries. Potential barriers to their application were identified and some are amenable to change, namely training patient education providers and developing evaluation tools. © Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.
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| 2. |
- Van der Elst, Kristien, et al.
(författare)
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What do patients prefer? A multinational, longitudinal, qualitative study on patient-preferred treatment outcomes in early rheumatoid arthritis
- 2020
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Ingår i: RMD Open. - London : BMJ Publishing Group Ltd. - 2056-5933. ; 6:2
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Tidskriftsartikel (refereegranskat)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. © Author(s) (or their employer(s)) 2020.
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| 3. |
- Jones, Bethan, et al.
(författare)
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Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis : a mixed-methods study with patients’ perspectives
- 2022
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Ingår i: RMD Open. - London : BMJ Publishing Group Ltd. - 2056-5933. ; 8:1
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To explore patients’ agreement andreasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA). Methods: This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree towhich patients with IA agreed with each recommendationfor PE (0=do not agree at all and 10=agree completely)and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants’ demographics and agreement levels. Qualitative contentanalysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons foragreement or disagreement with the recommendations,which constituted the categories. Results: The sample comprised 2779 participants(79% female), with a mean (SD) age 55.1 (13.1) yearsand disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median10 (IQR: 9–10) for most recommendations). Reasonsfor agreement with the recommendations included thebenefit of using PE to facilitate collaborative care andshared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients.Reasons for disagreement included lack of resources for PE, not wanting informa tion to be tailored by healthcare professionals and a reluctance to use telephone-basedPE. Conclusion: The EULAR recommendations for PE havebeen disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients’ preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals. © Author(s) (or their employer(s)) 2022.
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| 4. |
- 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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| 5. |
- 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: 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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| 6. |
- 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 multinational, multicentre, multilingual, longitudinal qualitative study
- 2019
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Ingår i: BMJ Open. - London, UK : BMJ Publishing Group Ltd. - 2044-6055. ; 9:3
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Including the patient perspective is important to achieve optimal outcomes in the treatment of rheumatoid arthritis (RA). Ample qualitative studies exist on patient outcomes in RA. A Belgian study recently unravelled what matters most to patients throughout the overwhelming and rapidly evolving early stage of RA. The present study, European Qualitative research project on Patient-preferred outcomes in Early Rheumatoid Arthritis (EQPERA) was created to contribute to a more universal understanding of patient-preferred health and treatment outcomes by integrating the perspectives of patients with early RA from three European countries.METHODS AND ANALYSIS: In EQPERA, a qualitative, explorative, longitudinal study will be implemented in The Netherlands and Sweden, parallel to the methods applied in the previously conducted Belgian study. 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 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. A meta-analysis of the local findings will be performed to explore and describe similarities, differences and patterns across countries.ETHICS AND DISSEMINATION: Ethics approval was granted by the responsible local ethics committees. EQPERA follows the recommendations of the Declaration of Helsinki. Two main papers are foreseen (apart from the data reporting on the local findings) for peer-reviewed publication.© Author(s) (or their employer(s)) 2019.
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| 7. |
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| 8. |
- Landgren, Ellen, et al.
(författare)
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“Mastering a New Life Situation” – Patients’ Preferences of Treatment Outcomes in Early Rheumatoid Arthritis – A Longitudinal Qualitative Study
- 2020
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Ingår i: Patient Preference and Adherence. - : Dove Medical Press Ltd.. - 1177-889X. ; 14, s. 1421-1433
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To explore patients’ preferred treatment outcomes during their first two years with rheumatoid arthritis (RA). Patients and Methods: A qualitative, longitudinal, multicenter study with interviews at two time points was performed in Sweden. Individual interviews were conducted at time point 1 with 31 patients with RA, defined as disease duration of ≤1 year and treatment for 3–7 months. Seven focus group interviews and five individual interviews were conducted at time point 2 with 22 patients 12–20 months after treatment initiation. The interviews were analyzed using the Qualitative Analysis Guide of Leuven. A core category with four related concepts emerged. Results: The core finding of patient-preferred treatment outcomes was “mastering a new life situation”. Patients preferred to experience control of the disease by controlling the symptoms and by experiencing absence of disease. To experience autonomy by regaining former activity level, experiencing independence, and being empowered was another preferred outcome. Patients preferred to regain identity through being able to participate, experience well-being, and regain former self-image. To experience joy in everyday life through vitality and believing in the future was another preferred outcome. Patients’ preferences developed over time from the acute phase of controlling the symptoms and wanting to return to the life they lived prior to diagnosis, to a more preventive way of self-management and empower-ment to master the new life situation. Conclusion: The patients’ preferred treatment outcomes during the first two years with RA were to master their new life situation and changed from a preference to return to a life lived prior disease onset, to a preference of living with quality of life, despite RA. This study increases the understanding of patients’ preferred treatment outcomes in the early disease course and can be a foundation for tailoring interventions to be more person-centered and to improve long-term treatment outcomes. © 2020 Landgren et al.
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| 9. |
- Landgren, Ellen, et al.
(författare)
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Patients’ experiences of health in early rheumatoid arthritis – a qualitative study
- 2018
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Ingår i: Annals of the Rheumatic Diseases. - London : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 77, s. 1802-1803
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Background: The World Health Organization defines health as ”a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”. Health changes dramatically when a person becomes ill in a chronic disease as rheumatoid arthritis (RA). RA is a disease with great impact on all aspects of life. Living with RA affects patients’ health including physical, emotional, psychological and social aspects. The purpose of a person-centered care is to see patients as experts; sharing decisions with them and helping them manage their health. Therefore it is important to understand how patients in early disease stage of RA experience the concept of health.Objectives: The purpose of this study was to describe patients’ experiences of health in early RA.Methods: The study had a descriptive design with a qualitative content analysis approach. Individual interviews were conducted with 24 patients with early RA. In this study the patients had disease duration less than 12 months. A manifest qualitative content analysis was used to analyze the question: “What does health mean to you?”Results: In the early stage of RA, patients experienced health as the most important goal in their life. They described health as well-being, independence, life satisfaction and vitality. Health as well-being meant to feel good, be painless and have a good sleep to feel rested. Health as independence meant to have both physical and financial prerequisites to perform everyday activities, to exercise and being able to travel. Health as life satisfaction meant to feel joy in life, enjoy the family and to believe in the future. Health as vitality meant to have the energy, power and strength to cope with everyday life. The patients expressed that their health had been adversely affected by the RA disease and they had a strong desire for full health including well-being, independence, life satisfaction and vitality.Conclusions: Patients in an early stage of RA describe a strong desire to regain health in terms of well-being, independence, life satisfaction and vitality. The concept of health at early RA is similar to health at established RA in terms of well-being, independence and life satisfaction. Unique findings for patients with early RA are the description of health as vitality, and the emphasis of having energy, power and strength to cope with everyday life. Health professionals should have these different ways of experiencing health in mind when providing person-centred care to patients with early RA. Depending on the patients’ perception of health, different support strategies are needed.
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| 10. |
- Landgren, Ellen, et al.
(författare)
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“To regain one’s health” – patients’ preferencesof treatment outcomes in early rheumatoid arthritis – a qualitative study
- 2019
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Ingår i: Annals of the Rheumatic Diseases. - London, UK : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 78:Suppl 2, s. 648-648
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Tidskriftsartikel (refereegranskat)abstract
- Background: Rheumatology care strives to identify and meet the needs of the patients, and to understand disease and treatment impact from the patients’ perspective. A better understanding of patients’ expectations from the treatment is needed to enable a patient centered approach in clinical practice and a shared-decision making as recommended in the EULAR treatment recommendations for rheumatoid arthritis (RA). Understanding of patients’ expectations in the early stage of the RA disease may facilitate adherence to treatment, patient independence and prevent unmet needs in the future.Objectives: To explore patients’ preferred treatment outcomes in early rheumatoid arthritis (eRA).Methods: A qualitative, explorative study. Individual interviews were conducted with 31 patients with eRA, defined as disease duration of ≤ 1 year and disease-modifying antirheumatic drugs (DMARDs) treatment for 3-6 months 1 . Interviews were analyzed using a constant comparison method according to the Qualitative Analysis Guide of Leuven (QUAGOL) and lasted in a core category and four related concepts.Results: The patient-preferred treatment outcomes in eRA were described in the core category “to regain one’s health” and the four related concepts: to experience external control of the disease, to experience independence, to regain identity and to experience joy in everyday life. The patients expected to experience external control of the disease by the given treatment to regain one’s health. It was perceived as controlling the symptoms and as absence of disease. Independence was perceived as regaining former activity levels, experiencing autonomy and using active coping strategies. Patients wanted to regain identity through participation, empowerment and their self-image. Joy in everyday life was perceived as vitality and believing in the future.Conclusion: Patients’ preferred treatment outcomes in eRA were to regain one’s health including both external and internal control. External control as disease control and independence as well as internal control as identity and joy in everyday life. The results from this study can assist healthcare professionals to better understand patients’ preferred treatment outcomes early in the disease process and to tailor the interventions accordingly to improve long term treatment outcome. © Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.
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