ObjectivesTo explore treatment outcomes preferred by patients with early rheumatoid arthritis (RA) and how these change throughout the early disease stage across three European countries.MethodsA 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.ResultsThe 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.ConclusionsThis 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.
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 empowerment 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.
BackgroundRheumatoid arthritis (RA) is a disease that greatly impacts all aspects of life. Living with RA affects patients’ physical, emotional, psychological, and social health. Patients with RA are treated with disease-modifying anti-rheumatic drugs (DMARDs) and monitored with tight control to achieve low disease activity or remission. Nevertheless, RA can be life-changing when the patients need long-term treatment to control the disease activity. The goal of treatment for patients with chronic diseases such as RA is to achieve optimal health and normal life. It is therefore important to gain knowledge about how patients experience everyday life a short period after the initiation of DMARD treatment.ObjectivesThe purpose of the study was to describe patients’ experiences of living with RA after 1-2 years of DMARD treatment.MethodsThe study has a qualitative design with an inductive approach. Focus groups (n=17) and individual (n=5) interviews were conducted with 22 patients with RA. The participants consisted of 15 women and 7 men with a mean age of 57 years and a disease duration of 12-21 months. The participants were treated with conventional or biological DMARDS for 12-20 months. The main questions were: “Can you tell me how RA impacts your daily life?” “Which outcomes of your RA are important to you?“ The interviews were analyzed with latent qualitative content analysis[1,2], and five categories with an overarching theme emerged (Table 1).ResultsPatients’ experiences of living with RA after 1-2 years of DMARD treatment gives new insights to life and were expressed as 1) Surrendering to disease limitations due to being restricted by pain, fatigue, and in function; 2) Adapting to disease limitations by adjusting one´s work balance and one’s social life; 3) Transitioning in self-identity due to disease limitations by not recognizing oneself and experiencing a change of bodily appearance and mood; 4) Fighting disease limitations by experiencing joy through exercise, promoting health by exercise and dietary habits, and; 5) Feeling humility despite disease limitations by being grateful for the treatment and seizing the day.ConclusionAlthough patients have been living with RA and treated with DMARD for 1-2 years, they are still struggling to make everyday life work. Although patients adapt their lives to the new conditions, they are affected by symptoms such as fatigue, pain, stiffness, and side effects such as nausea, hair loss, and weight gain. However, patients highlight the positive impact of how exercise influences their health and how living with RA gives new insights to life.References[1]. Graneheim UH, Lindgren BM, Lundman B. Methodological challenges in qualitative content analysis: A discussion paper. Nurse Educ Today. 2017;56:29-34.[2]. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24:105-12.Table 1.Overview of the theme, categories, and sub-categories showing patients’ experiences living with RA after 1-2 years of DMARD treatment.ThemeLiving with RA gives new insights to lifeCategoriesSurrendering to disease limitationsAdapting to disease limitationsTransitioning in self-identity due to disease limitationsFighting disease limitationsFeeling humility despite disease limitationsSub-categoriesTo be restricted by painTo adjust one´s work balanceTo not recognize oneselfTo experience joy through exerciseTo be grateful for the treatmentTo be restricted by fatigueTo adjustone’s social lifeTo experience change of bodily appearanceTo promote health by exercisingTo seize the dayTo be restricted in functionTo experience change of moodTo promote health through dietary habitsAcknowledgements:NIL.Disclosure of InterestsNone Declared.
Background:Data on patients’ experience can identify strengths and weaknesses with given care, why a person-centred care will improve health care quality. In rheumatology care, most research on patient preferences for and experiences of RA care is performed in patients with established RA and less often in patients with early RA. In the early course of RA patients often struggle to manage their new life situation with a chronic disease and its treatment. Expectations and experiences of health care may change over time why it is important to understand how newly diagnosed patients perceive person-centred care.Objectives:To explore patients’ perceptions of person-centred care early in the RA disease course within the framework of person-centred care.Methods:In this qualitative study 31 patients with early RA from four rheumatology specialist outpatient clinics were interviewed. An abductive qualitative content analysis was conducted based on the framework of McCormack and McCance (2006, 2016). The four constructs; prerequisites, care environment, person-centred processes, and person-centred outcomes constituted the four categories in the deductive part of the study. An inductive analysis revealed eleven sub-categories exploring the content of person-centred care for patients with early RA.Results:For patients with early RA person-centred care was described as; 1. Prerequisites were to be treated with respect, to meet dedicated healthcare professionals, and to meet professional competence. 2. The care environment was to have access to a multidisciplinary team, to have access to health care, and a supportive organization. 3. Person-centred processes were to be listened to, to be supported, and to be involved in decision-making. 4. The person-centred outcomes were to be satisfied with received health care and to achieve optimal health.Conclusion:A true person-centred care is important to patients early in the RA disease course, supporting the relevance to implement person-centred approach at all stages in the health care system. This study contributes to information about how to further develop person-centredness in rheumatology care also early in the disease course.References:[1]McCormack, B., & McCance, T. V. (2006). Development of a framework for person-centred nursing. J Adv Nurs, 56(5), 472-479. doi:10.1111/j.1365-2648.2006.04042.x[2]McCormack, B., & McCance, T. V. (2016). Person-centred practice in nursing and health care: theory and practice (2nd edition ed.): John Wiley & Sons.Disclosure of Interests:None declared
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