Objective:Patients with rheumatoid arthritis perceive reduced quality of life in several domains, such as physical health, level of independence, environment and personal beliefs, compared with the healthy population. There is an increasing interest in quality of life in clinical and medical interventions. Few studies have explored patients’ individual conceptions of quality of life, and interviews can thus complement quantitative studies. There is a need for a deeper understanding of the patients’ experiences of quality of life, with regard to living with a long-term condition such as rheumatoid arthritis. The aim of this study was to explore the variation of ways in which patients with established rheumatoid arthritis understand the concept of quality of life.Methods:The study had a qualitative design with a phenomenographic approach, which was used to describe variations in how individuals experience their quality of life. The study is based on interviews with 22 patients with established rheumatoid arthritis enrolled in the BARFOT (better anti-rheumatic pharmacotherapy) study.Results:The concept of quality of life could be understood in three different ways: (1) independence in terms of physical functioning and personal finances, (2) empowerment in how to manage life and (3) participation as an experience of belonging in a social context.Conclusion:The different conceptions of quality of life reflect the complexity in the concept, including physical, psychological and social aspects. This complexity is important to have in mind when health professionals support patients in enhancing their quality of life.
IntroductionRheumatoid arthritis (RA) is a chronic, inflammatory, and systemic disease with symptoms that limit activities and affect quality of life. RA is associated with an increased risk of developing comorbidities, some of which are also known to be associated with lifestyle habits such as physical activity, diet, smoking, and alcohol. There has been an augmented focus on the implementation and maintenance of healthy lifestyle habits even for patients with RA in the past decade, but little is known about the link between patients’ experiences of lifestyle habits and quality of life. The aim of the study was thus to describe and explore how patients with established RA experience the influence of lifestyle habits on quality of life.MethodsThe study had a descriptive and explorative design, based on qualitative content analysis. Strategic sampling was used in order to achieve variations in experiences. Twenty-two patients with RA (14 women and 8 men) from 30 to 84 years old, with a disease duration ranging from 8 to 23 years, were interviewed.ResultsThe analysis of the influence of lifestyle habits on quality of life resulted in the theme balancing between ideality and reality. Three categories emerged about how lifestyle habits influenced quality of life by limitations (including insufficiency and adaptation), self-regulation (including guilt and motivation), and companionship (including belonging and pleasure).ConclusionsQuality of life for patients with established RA was influenced by the balance between ideality and reality in the lifestyle habits: physical activity, diet, smoking, and alcohol. This is important new knowledge for health professionals when discussing lifestyle habits with RA patients.
PurposeAt the end of the twentieth century, the outcome of rheumatoid arthritis (RA) was shown to be unsatisfactory and new therapeutic strategies were introduced. This initiated a register-based long-term study of early RA, the Better Anti-Rheumatic PharmacOTherapy (BARFOT) study. The aims were to evaluate the disease course and to acquire knowledge for improved care.Patients and methodsBARFOT is a multicentre observational study of patients with early RA, consecutively included 1992–2006. The patients are followed in daily practice according to a structured protocol for 15 years and data recorded in a web-based register. Also, through linkage of the BARFOT register to national registers we have acquired information on comorbidity and mortality.ResultsIn all, 2857 patients have been included and over 80 scientific articles have been published. Phenotypic characteristics at disease onset, i.e. gender, smoking habits and autoantibody profiles have been addressed. The disease course over 15 years was described. Early predictors for persistent disease activity, impaired function, joint damage and co-morbidities have been identified. Treatment strategies have been studied. A randomized sub-study gave strong support for the treatment of recent RA with low-dose prednisolone in combination with disease-modifying anti-rheumatic drug. Furthermore, the impact of lifestyle factors, such as smoking, alcohol consumption, body weight and physical activity has been addressed.ConclusionA register-based study like BARFOT has provided a basis for optimal long-term management of patients with RA. In addition, the register has made it possible to perform a diversity of studies of RA addressing various issues of major relevance to the patients.
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