BackgroundThe prevalence for rheumatoid arthritis (RA) is 0,5 - 1,0% [1], rises with age and occurs more frequently in women with the ratio 3: 1 [2]. It is probably the reason why research has been focusing on women and knowledge about men is scarce. RA is strongly associated with patients experiences of physical, emotional, and social restrictions and quality of life is poor compared to the general population [3]. What is missing from the literature is how men with RA perceive, interpret and understand to live with a chronic illness.ObjectivesThe aim of this study was to to develop an understanding of how men live with RA and their coping strategies to live with a chronic disease like RA.MethodsA qualitative interview study was conducted based on individual semi-structured interviews. A purposive sample of 17 men with RA, (average age 58 (range 33-70)), diagnosed with RA on average 15 years previously (min. 5, max 34 years) were recruited from the rheumatology outpatient department, Glostrup Hospital. Semi-structured interviews were conducted to understand men's experiences living with RA. The recorded interviews were transcribed verbatim, and analysed using Interpretive Description as described by Thorne [4] and by use of the Nvivo software. An interpretive description of the men's experiences was established.ResultsThe analysis revealed that men with RA are affected in several dimensions of their every daily life. Seven categories influencing men with RA were extracted: (1) Frame time of diagnosis, (2) Loss of bodily capacity, (3) Adapting to life with medicine, (4) Connecting to job situation, (5) Health literacy, (6) To navigate as a social individual and (7) The challenged to masculine rationality.ConclusionsStudy participants from a wide range of age and disease duration described their experience of living with RA as being related to essential issues about masculinity, social network and strategies to handle consequences of RA in everyday life. These findings demonstrate that RA has an impact on how men define themselves as partner and their masculine identity. Physical activity was highlighted as an important part of being a man. Knowledge from this study will be used in the planning of our subsequent intervention study targeted men with RA.ReferencesScott, D.L., F. Wolfe, and T.W.J. Huizinga, Rheumatoid arthritis. The Lancet, 2010. 376(9746): p. 1094-1108.Alamanos, Y. and A.A. Drosos, Epidemiology of adult rheumatoid arthritis. Autoimmun Rev, 2005. 4(3): p. 130-6.Ovayolu, N., O. Ovayolu, and G. Karadag, Health-related quality of life in ankylosing spondylitis, fibromyalgia syndrome, and rheumatoid arthritis: a comparison with a selected sample of healthy individuals. Clin Rheumatol, 2011. 30(5): p. 655-64.Thorne, S., Interpretive Description 2008, Walnut Creek, CA: Left Coast Press.Disclosure of InterestNone declared
BackgroundThere is an increasing focus on how patients with inflammatory arthritis (IA) manage living with arthritis. There are a preponderance of women with RA (70%), thus previous research has overall focused on female patients and their management. Research in other long term conditions suggests men need their own health strategy1, thus it is important to investigate whether there are gender differences in coping strategies and illness acceptance within chronic IA.ObjectivesTo explore gender differences in IA as reflected by coping strategies and illness acceptance. Furthermore, to identify factors associated with high degree of illness acceptance.MethodsThe study was conducted as a nationwide cross-sectional study using online survey during 2016. Patients >18 with rheumatoid arthritis (RA), psoriatic arthritis (PsA) and axial spondyloarthritis (axSpA) were invited to contribute through: The Danish Rheumatism Organization, local arthritis networks, diagnosis networks, and rheumatology departments across the country. The self-report online questionnaire comprised Socio-demographics, Diagnosis, Symptoms (pain, fatigue, global), Medications, Disease Activity, Functional Status, Coping (i.e. confrontation, avoidance and acceptance-resignation) and Illness Acceptance. As recommended by EULAR 2 patients with RA (KVJ & LA; male and female, respectively), were included as equal research partners in all phases of the study. Descriptive statistics were applied to explore gender differences, and logistic regression analyses were performed to test for factors associated with illness acceptance.ResultsIn total, 664 (85% women) were included in the study; RA 53%, PsA 27% and axSpA 20%. More men (40%) than women (30%) were treated with biological DMARDS (p=0.048). No significant gender differences were found in disease activity, symptoms and functional status. Overall, the total sample had high degree of illness acceptance and no significant difference was found between males and females. Regarding illness coping, women with IA tend to use avoidance as a coping strategy significantly more than men (p=0.015). In the final multivariable regression model, higher education (OR=1.46; 1.02–2.11), longer time diagnosed (OR=1.21 per 1-yr. increase; 1.01.-1.05), lower physical disability (OR=0.76; 0.69–0.85), better coping with fatigue (OR=1.13; 1.05–1.22), less avoidance (OR=0.93; 0.87–0.99) and acceptance-resignation (OR=0.62; 0.62–0.75) as coping strategies were significantly associated with high degree of illness acceptance.ConclusionsNo significant differences were found in illness acceptance among women and men with IA. However, women tended to use avoidance as a coping strategy more than men. High levels of illness acceptance may be explained by high education, longer disease duration, and better physical function, better coping of fatigue and less use of passive coping strategies.References White A, McKee M, Richardson N, et al. Europe's men need their own health strategy. BMJ 2011;343:d7397. Disclosure of InterestNone declared
Background Ankylosing Spondylitis (AS) is characterized by inflammation and leads to recurrent deep pain and stiffness in the lower back, spine and neck. Available research about AS are mainly focused on medical treatment, clinical trials and the development of the disease. Patients with AS have significantly reduced quality of life (QoL), both compared to sex-and age-matched healthy population and compared to other patients with chronic diseases. Consequently, patients with AS need to learn to live with limited physical activity and affected QoL. Few studies illuminate the subjective aspects of AS such as patients' perspective on living with AS. AS affects men 2/3 times more often than women. Therefore, there is a specific need to focus on how men with AS adapt to this chronic disease. Objectives To develop an understanding of how men experience Ankylosing Spondylitis and the challenges related to living with AS a chronic disease. Methods A qualitative interview study was conducted. A purposive sample of 13 men diagnosed with AS mean age 44 (range 32-58) was recruited from a rheumatology outpatient clinic. Duration of disease was mean 12.6 years (range 0.3-28 years) and time from first sign before final diagnosis was mean 7.4 years (range 2-20 years). Semi-structured interviews were conducted using a thematic interview guide to describe men's experiences having AS. The interviews were analysed using content analysis inspired by Graneheims qualitative methodology. A patient was a research partner involved from the very first beginning of the study. He validated the study design from a patient perspective, qualified the scientific idea and participated throughout the entire scientific process. His experience as a male patient added a unique perspective to the study. Results The analysis revealed four categories: (1) Approaching a diagnosis referring to men describing how it was to live with first signs of AS. Being diagnosed was related to both relief and sadness. (2) Ill in a social context referring to the importance of staying in existing close relations, but also painful experiences related to limitations in the role as a father. (3) Being challenged as a man referring to their perception of being a man and their masculinity being challenged. (4) The importance of remaining bodily well referring to the significance of being physically active, which helped the men to endure e.g. pain. Due to both the diagnosis and to the medical treatment it became important for them to strive to remain bodily well as a man. On the basis of these categories, an overall category emerged: “An invisible companion for life” covering the overall experiences of living with an invisible disease for good. Conclusions This qualitative study demonstrates that AS has a great impact on men's perception of themselves being a man, their relationships as partner and as father, their social life and their masculine identity. The study has implication for future health promoting interventions. Interventions aiming to stabilise male AS ...
BackgroundDuring recent years the medical treatment of inflammatory arthritis (IA) has improved and become more efficient. However, many patients still continue to experience serious negative impact on both their physical and psychosocial health and wellbeing. Therefore, it is essential to identify patients' needs for support for managing IA in everyday life.ObjectivesTo explore preferences for self-management and support services in patients with inflammatory arthritis.MethodsAdult patients with IA (rheumatoid arthritis (RA), psoriatic arthritis (PsA) and axial spondyloarthritis (axSpA)) were invited through The Danish Rheumatism Organization, arthritis networks, and hospitals' rheumatology departments across the country to participate in a cross-sectional study using online survey methodology. The questionnaire included questions on patient's interest in participation (requiring an answer of yes or no) in a total of 30 different self-management and support services within eight overall categories (i.e. discussion groups, one-to-one sessions, question and answer sessions, organised talks, physical activity, education sessions, raising arthritis awareness events, and online services), and preferences regarding practical issues of taking part. Descriptive statistics were applied.ResultsIn total, 664 patients (85% female) responded, of which 53% had RA, 27% had PsA and 20% had axSpA. Respondents' mean age was 50 years (SD=13), and median disease duration was 10 years (IQR=4–16). Of the 30 different self-management and support services, the most popular was Online service: Website for information (about symptoms, treatment and self-management of arthritis) with 91% of the respondents indicating interest. This was followed by One-to-one session with a rheumatologist (about coping with arthritis) (89%) and Organised talks by researchers (about current rheumatology research) (83%). Also, One-to-one session with a nurse, One-to-one session with a physiotherapist, and Education session on managing symptoms were all chosen by more than 80% of the respondents. The vast majority of respondents (81%) indicated to prefer a group with no fixed commitments and an advertised time table. Regarding timing of support, the majority (70%) indicated that self-management and support services should optimally be offered whenever needed. However, respondents also stated it would be helpful within the first six months of being diagnosed (49%) as well as during flares (30%).ConclusionsPatients with IA show high overall interest in taking part in self-management and support services. Especially, websites for finding disease related information, one-to-one sessions with health professionals, organised talks about rheumatology research and education on symptom management are requested. The preference regarding practical issues seems to be for a flexible delivery according to the patients' fluctuating needs during their illness course.Disclosure of InterestNone declared
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