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      ‘I turned in my man card’: a qualitative study of the experiences, coping styles and support needs of men with systemic sclerosis

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          Abstract

          Objectives

          Men with SSc have a more severe clinical phenotype and reduced survival compared with women. No previous psychosocial studies have focused solely on men with SSc. This study aimed to explore experiences, coping strategies and support preferences of men with SSc.

          Material and methods

          An international qualitative research study comprising seven focus groups (three USA, four UK) of 25 men with SSc. Transcripts were analysed using reflexive thematic analysis.

          Results

          Three overarching themes and one underpinning theme were identified. In ‘impact of SSc on masculinity’, the men described an ‘impact on roles and activities’, reported ‘sex, intimacy, and erectile dysfunction’ as a salient issue that may be overlooked by clinicians, and experienced challenges to ‘masculine self-image’. ‘Dealing with SSc’ meant ‘always being prepared’, ‘becoming an expert’ and ‘balancing priorities’ in responsibilities, activities and symptom management. In ‘support for living with SSc’ men were selective in ‘(Not) talking about SSc’, would ‘(reluctantly) accept help’ and described ‘preferences for support’. Underpinning these experiences was ‘facing an uncertain future’ with some participants preferring not to focus on an unpredictable future, and others worrying about disease progression.

          Conclusion

          These novel data suggest SSc impacts male patients’ masculine identity and roles, and although they will accept practical help, they may mask the full emotional impact. Sex and intimacy are important overlooked issues with erectile dysfunction often not discussed at diagnosis. Further research should develop a self-management intervention for men with rheumatic diseases with a combination of disease-specific and common core components.

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          Most cited references29

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          Systemic sclerosis.

          Systemic sclerosis, also called scleroderma, is an immune-mediated rheumatic disease that is characterised by fibrosis of the skin and internal organs and vasculopathy. Although systemic sclerosis is uncommon, it has a high morbidity and mortality. Improved understanding of systemic sclerosis has allowed better management of the disease, including improved classification and more systematic assessment and follow-up. Additionally, treatments for specific complications have emerged and a growing evidence base supports the use of immune suppression for the treatment of skin and lung fibrosis. Some manifestations of the disease, such as scleroderma renal crisis, pulmonary arterial hypertension, digital ulceration, and gastro-oesophageal reflux, are now treatable. However, the burden of non-lethal complications associated with systemic sclerosis is substantial and is likely to become more of a challenge. Here, we review the clinical features of systemic sclerosis and describe the best practice approaches for its management. Furthermore, we identify future areas for development.
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            2013 classification criteria for systemic sclerosis: an American College of Rheumatology/European League against Rheumatism collaborative initiative.

            The 1980 American College of Rheumatology (ACR) classification criteria for systemic sclerosis (SSc) lack sensitivity for early SSc and limited cutaneous SSc. The present work, by a joint committee of the ACR and the European League Against Rheumatism (EULAR), was undertaken for the purpose of developing new classification criteria for SSc. Using consensus methods, 23 candidate items were arranged in a multicriteria additive point system with a threshold to classify cases as SSc. The classification system was reduced by clustering items and simplifying weights. The system was tested by 1) determining specificity and sensitivity in SSc cases and controls with scleroderma-like disorders, and 2) validating against the combined view of a group of experts on a set of cases with or without SSc. It was determined that skin thickening of the fingers extending proximal to the metacarpophalangeal joints is sufficient for the patient to be classified as having SSc; if that is not present, 7 additive items apply, with varying weights for each: skin thickening of the fingers, fingertip lesions, telangiectasia, abnormal nailfold capillaries, interstitial lung disease or pulmonary arterial hypertension, Raynaud's phenomenon, and SSc-related autoantibodies. Sensitivity and specificity in the validation sample were, respectively, 0.91 and 0.92 for the new classification criteria and 0.75 and 0.72 for the 1980 ACR classification criteria. All selected cases were classified in accordance with consensus-based expert opinion. All cases classified as SSc according to the 1980 ACR criteria were classified as SSc with the new criteria, and several additional cases were now considered to be SSc. The ACR/EULAR classification criteria for SSc performed better than the 1980 ACR criteria for SSc and should allow for more patients to be classified correctly as having the disease. Copyright © 2013 by the American College of Rheumatology.
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              Qualitative research. Introducing focus groups.

              This paper introduces focus group methodology, gives advice on group composition, running the groups, and analysing the results. Focus groups have advantages for researchers in the field of health and medicine: they do not discriminate against people who cannot read or write and they can encourage participation from people reluctant to be interviewed on their own or who feel they have nothing to say.
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                Author and article information

                Contributors
                Journal
                Rheumatology (Oxford)
                Rheumatology (Oxford)
                brheum
                Rheumatology (Oxford, England)
                Oxford University Press
                1462-0324
                1462-0332
                June 2023
                07 October 2022
                07 October 2022
                : 62
                : 6
                : 2160-2167
                Affiliations
                Department of Social Sciences, Faculty of Health and Applied Sciences, University of the West of England , Bristol, UK
                Department of Rheumatology, North Bristol NHS Trust , Bristol, UK
                Bristol Medical School (Translational Health Sciences), University of Bristol , Bristol, UK
                School of Medicine, Tulane University , New Orleans, LA, USA
                Centre for Rheumatology, Division of Medicine, University College London , London, UK
                Department of Health Sciences, University of York , York, UK
                University of Michigan Scleroderma Program, Institute for Healthcare Policy and Innovation, University of Michigan , Ann Arbor, MI, USA
                Department of Rheumatology, Royal United Hospitals Bath NHS Foundation Trust , Bath, UK
                Department of Rheumatology, Tameside and Glossop Integrated Care NHS Foundation Trust , Ashton-Under-Lyne, UK
                Division of Musculoskeletal and Dermatological Sciences, Faculty of Biology, Medicine and Health, The University of Manchester , Manchester, UK
                Author notes
                Correspondence to: Caroline A. Flurey, Faculty of Health and Applied Sciences, University of the West of England, Frenchay Campus, Coldharbour Lane, Bristol BS16 1QY, UK. E-mail: Caroline2.Flurey@ 123456uwe.ac.uk
                Author information
                https://orcid.org/0000-0002-7092-6170
                https://orcid.org/0000-0002-2793-2364
                https://orcid.org/0000-0003-3975-8938
                https://orcid.org/0000-0003-1412-4453
                Article
                keac585
                10.1093/rheumatology/keac585
                10234190
                36205545
                d21ad934-0f1a-47ea-8d70-ac956e9821bd
                © The Author(s) 2022. Published by Oxford University Press on behalf of the British Society for Rheumatology.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License ( https://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com

                History
                : 12 July 2022
                : 28 September 2022
                : 26 October 2022
                Page count
                Pages: 8
                Funding
                Funded by: World Scleroderma Foundation and Association des Sclérodermique de France;
                Funded by: National Institute of Health Research;
                Funded by: Clinical Research Network;
                Categories
                Clinical Science
                AcademicSubjects/MED00360

                Rheumatology
                ssc,scleroderma,men,gender,masculinity,quality of life,erectile dysfunction,mortality,qualitative
                Rheumatology
                ssc, scleroderma, men, gender, masculinity, quality of life, erectile dysfunction, mortality, qualitative

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