scholarly journals O28 'I’ve handed back my man card': experiences, coping styles, and support preferences of men with systemic sclerosis

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Caroline A Flurey
Keyword(s):  
Social Support ◽  
Erectile Dysfunction ◽  
Systemic Sclerosis ◽  
Sense Of Self ◽  
Severe Disease ◽  
Survival Rates ◽  
Emotional Impact ◽  
Know How ◽  
Psychosocial Studies ◽  
Male Patients

Abstract Background/Aims  Men with systemic sclerosis (SSc) have significantly reduced survival rates and report more severe disease than women. However, no previous psychosocial studies have focused solely on men with the condition. This study qualitatively explores experiences, coping strategies and support preferences of men with SSc. Methods  Seven focus groups in the UK and USA with men with systemic sclerosis to explore their experiences of SSc, coping mechanisms and ideas for effective support. Participants were purposively sampled to reflect a range of disease and demographic characteristics. Data were analysed using inductive thematic analysis. Results  25 male patients mean age 60years (SD: 9.3); disease duration 7years (SD 7.3); 77% diffuse cutaneous SSc; 70% Caucasian. Four broad themes are proposed: “It’s a little embarrassing”: Erectile Dysfunction: Participants reported erectile dysfunction (ED) as an important symptom impacting quality of life, that felt ignored by clinicians (“I had to figure it out”). They reported needing prompting to feel comfortable discussing ED (“It’s important they ask the question first”). “You always think about how much this is going to shorten your life”: Mortality: Participants discussed the life-limiting nature of SSc (“I worry a lot about what’s happening on the inside”). They grieved for future events they may not be around for, and planned ahead for death (“I figured [my wife] better know how to do this”). “[My wife] makes more money than me”: Impact on masculinity: Loss of the breadwinner role impacted participants’ sense of self-worth (“I ask myself what am I here for?”). They were resigned to needing practical help, but found it hard to accept (“You know how hard it is to have your wife...put your underwear on?”) and often used humour as a shield (“I say ‘here, I turned in my man-card, open this for me’”). “I don’t harp on”: Social support: Participants reported not discussing SSc with their friends (“that’s my personal business”). Whilst they will discuss the practical impact with family, they often protected them from the emotional impact (“I wanna tell people...but I’ve gotta try and stay positive and focused for as long as I can because I’ve got [mum and wife] depending on me”. Conclusion  SSc impacts male patients’ masculine identity and roles. Some men withhold emotional impact from their family to maintain a protector role, which may limit their social support. Clinicians should be aware male patients report erectile dysfunction as an ignored symptom, and need prompting to feel comfortable discussing this. Disclosure  C.A. Flurey: None.

scholarly journals Erectile dysfunction is frequent in systemic sclerosis and associated with severe disease: a study of the EULAR Scleroderma Trial and Research group

2012 ◽  
Vol 14 (1) ◽  
pp. R37 ◽  
Author(s):  
Chingching Foocharoen ◽  
Alan Tyndall ◽  
Eric Hachulla ◽  
Edoardo Rosato ◽  
Yannick Allanore ◽  
...  
Keyword(s):  
Erectile Dysfunction ◽  
Systemic Sclerosis ◽  
Research Group ◽  
Severe Disease

Organic and psychogenic erectile dysfunction in male patients

2008 ◽  
Author(s):  
M. S. Venetikou ◽  
T. Lampou ◽  
D. Gizani
Keyword(s):  
Erectile Dysfunction ◽  
Male Patients

scholarly journals THU0351 MUSCLE INVOLVEMENT IN PATIENTS WITH SYSTEMIC SCLEROSIS AND ANTI-PM/SCL+ ANTIBODIES IS ASSOCIATED WITH CARDIAC AND PULMONARY INVOLVEMENT. ANALYSIS OF THE MULTICENTRE EUSTAR COHORT.

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 407.1-407
Author(s):  
M. G. Lazzaroni ◽  
S. Zingarelli ◽  
P. Airò ◽  
Y. Allanore ◽  
O. Distler
Keyword(s):  
Systemic Sclerosis ◽  
Cardiac Involvement ◽  
Severe Disease ◽  
Disease Onset ◽  
Pulmonary Involvement ◽  
Left Ventricular ◽  
Research Support ◽  
Muscle Involvement ◽  
Group A ◽  
Tendon Friction Rubs

Background:Anti-PM/Scl antibodies positivity has been associated with frequent skeletal muscle involvement in patients with Systemic Sclerosis (SSc) in different studies, including the EUSTAR cohort (1). Moreover, although myositis has been previously associated with heart involvement in SSc patients (2), this issue has never been explored among anti-PM/Scl+ patients.Objectives:To evaluate the cardiac involvement in anti-PM/Scl patients with SSc in the large multicentre EUSTAR database, with focus on the subgroup of patients with muscle involvement.Methods:Patients from the EUSTAR database were included when the item anti-PM/Scl was fulfilled in at least one visit.Results:Anti-PM/Scl status was available in 7,353 SSc patients from EUSTAR database: 295 were anti-PM/Scl+. After exclusion of 151 patients with multiple autoantibody positivity, 144 anti-PM/Scl + patients were compared with 7,058 anti-PM/Scl- patients. Among them, 3,120 (44.2%) were positive for ACA, 2,361 (33.5%) for anti-Topo I and 274 (3.88%) for anti-RNAP3.Regarding the specific cardiac outcomes, in the anti-PM/Scl+ as compared to the anti-PM/Scl- group, a decreased rate of elevated sPAP at ECHO was recorded (12.8% vs 25.0%, p:0.001), while no differences were observed in the frequency of conduction blocks (26.2% vs 23.7%, p:0.526), abnormal diastolic function (33.9% vs 36.4%, p:0.582), pericardial effusion (10.2% vs 10.9%, p:1.000) and LVEF ≤50% (4.76% vs 6.11%, p:0.818). In multivariate analysis, adjusted for age at disease onset, sex, and disease duration, the negative association of anti-PM/Scl with elevated sPAP was not confirmed (p:0.061).When comparing anti-PM/Scl+ patients with (n=47) and without (n=87) CK elevation, the former group had a higher frequency of conduction blocks (43.2% vs 17.5%, p:0.005; OR 95% CI 3.47, 1.51-7.97) and left ventricular dysfunction, both diastolic (45.6% vs 27.2%, p:0.050; OR 95% CI 2.25, 1.05-4.81) and systolic (LVEF ≤50% 13.3% vs 0%, p:0.018; OR 95% CI 16.8, 0.87-324). Moreover, anti-PM/Scl+ patients with CK elevation had significantly increased rate of lung fibrosis on HRCT (p:0.045), intestinal symptoms (p:0.017), joint contractures (p:0.045) and tendon friction rubs (p:0.034).Conclusion:In the largest series of anti-PM/Scl positive SSc patients so far reported, muscle involvement in anti-PM/Scl+ patients (defined as increased serum CK) seems to represent a marker of a more severe disease phenotype, including a higher frequency of cardio-pulmonary involvement.References:[1]Lazzaroni MG, et al. Ann Rheum Dis 2018. 77 (2), 421-2.[2]Follansbee WP, et al. Am Heart J 1993. 125: 194-203.Acknowledgments:Authors would like to thank the patients’ association GILS (Gruppo Italiano Lotta Sclerodermia) for the grant that supported the project.Disclosure of Interests:Maria Grazia Lazzaroni: None declared, Stefania Zingarelli: None declared, Paolo Airò: None declared, Yannick Allanore Grant/research support from: BMS, Inventiva, Roche, Sanofi, Consultant of: Actelion, Bayer AG, BMS, BI, Oliver Distler Grant/research support from: Grants/Research support from Actelion, Bayer, Boehringer Ingelheim, Competitive Drug Development International Ltd. and Mitsubishi Tanabe; he also holds the issued Patent on mir-29 for the treatment of systemic sclerosis (US8247389, EP2331143)., Consultant of: Consultancy fees from Actelion, Acceleron Pharma, AnaMar, Bayer, Baecon Discovery, Blade Therapeutics, Boehringer, CSL Behring, Catenion, ChemomAb, Curzion Pharmaceuticals, Ergonex, Galapagos NV, GSK, Glenmark Pharmaceuticals, Inventiva, Italfarmaco, iQvia, medac, Medscape, Mitsubishi Tanabe Pharma, MSD, Roche, Sanofi and UCB, Speakers bureau: Speaker fees from Actelion, Bayer, Boehringer Ingelheim, Medscape, Pfizer and Roche

scholarly journals SAT0316 ANTI-PM/SCL ANTIBODIES IN SYSTEMIC SCLEROSIS: CLINICAL ASSOCIATIONS IN THE RESCLE COHORT

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1103.1-1104
Author(s):  
N. Iniesta-Arandia ◽  
G. Espinosa ◽  
A. Guillen del Castillo ◽  
C. Tolosa ◽  
G. M. Lledó ◽  
...  
Keyword(s):  
Systemic Sclerosis ◽  
Survival Data ◽  
Death Rate ◽  
Administrative Support ◽  
Medical Science ◽  
Survival Rates ◽  
Clinical Manifestations ◽  
Study Group ◽  
Allergy Immunol ◽  
Science Service

Background:Anti-PM/Scl antibodies are associated to systemic sclerosis (SSc) but are not specific to SSc. The true prevalence of anti-PM/Scl antibodies in SSc is unknown, ranging from 2.5% to 12.5%. An association between anti-PM/Scl antibodies with muscular involvement, pulmonary fibrosis, calcinosis, and a relatively benign prognosis have been described.Objectives:To compare the clinical manifestations and prognosis of SSc patients according the presence of anti-PM/Scl antibodies in the cohort of RESCLE (Spanish Scleroderma Registry).Methods:From the Spanish Scleroderma Study Group database, we selected patients in whom anti-PM/Scl antibodies had been tested. We compared demographic features, clinical manifestations, laboratory characteristics, and survival data between patients according the anti-PM/Scl antibodies status.Results:72 out of 947 (7%) patients tested positive for anti-PM/Scl antibodies. As presenting SSc manifestations, patients with anti-PM/Scl antibodies had higher prevalence of puffy fingers (11% versus 2%; p=0.002) and arthralgias (11% versus 4%; p=0.03), and lower prevalence of Raynaud’s phenomenon (65% versus 82%, p=0.002). Regarding cumulative manifestations, myositis (51% versus 15%; p<0.001), arthritis (43% versus 22%; p=0.001), and interstitial lung disease (ILD) (60% versus 45%, p=0.014) were more prevalent in patients with anti-PM/Scl antibodies. In fact, those patients with anti-Pm/Scl antibodies presented with FVC (77.4% ± 23.1% versus 85.8% ± 23,1%; p=0.006) and more severe ILD defined as FVC <70% (41% versus 24%; p=0.004). Death rate was similar in patients with and without PM/Scl antibodies (18% versus 17%; p=0.871).We did not find differences in terms of death rate nor in the causes of death (SSc and non-SSc related) according to the anti-PM/Scl antibodies profile.The 5- and 10-years survival rates of patients with anti-PM/Scl antibodies were 91% and 82% respectively, without differences with those without these antibodies (93% and 85%, respectively).Conclusion:In Spanish SSc patients, the presence of anti-PM/Scl antibodies confer a distinctive clinical profile. However, anti-PM/Scl antibodies do not play a role in the prognosis of these patients.References:[1]Stochmal A, Czuwara J, Trojanowska M, Rudnicka L. Antinuclear antibodies in systemic sclerosis: an update. Clin Rev Allergy Immunol 2020;58(1):40-51. doi: 10.1007/s12016-018-8718-8.Acknowledgments:We gratefully acknowledge all investigators who are part of the RESCLE Registry. We also thank the RESCLE Registry Coordinating Centre, S&H Medical Science Service, for their quality control data, logistic and administrative support and Prof. Salvador Ortiz, Universidad Autónoma de Madrid and Statistical Advisor S&H Medical Science Service for the statistical analysis of the data presented in this paper.Disclosure of InterestsNerea Iniesta-Arandia: None declared, Gerard Espinosa Speakers bureau: Glaxo-Smith-Kline, Janssen, Boehringer, Rovi, Alfredo Guillen del Castillo: None declared, Carles Tolosa Consultant of: Actelion pharmaceuticals, GSK, MSD., Gema Maria Lledó: None declared, Dolores Colunga Argüelles Consultant of: Actelion pharmaceuticals, GSK, MSD., Cristina González-Echávarri: None declared, Luis Sáez-Comet: None declared, Norberto Ortego: None declared, Jose Antonio Vargas-Hitos: None declared, Manuel Rubio-Rivas: None declared, Mayka Freire: None declared, Juan José Rios: None declared, Monica Rodriguez-Carballeira: None declared, Luis Trapiella Martínez: None declared, Vicent Fonollosa Pla Speakers bureau: Actelion, Carmen Pilar Simeón-Aznar Consultant of: Actelion pharmaceuticals, GSK, MSD., on behalf of RESCLE Investigators, Autoimmune Diseases Study Group (GEAS): None declared

scholarly journals Epidemiology of systemic sclerosis: a multi-database population-based study in Tuscany (Italy)

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Alessio Coi ◽  
◽  
Simone Barsotti ◽  
Michele Santoro ◽  
Fabio Almerigogna ◽  
...  
Keyword(s):  
Systemic Sclerosis ◽  
Rare Diseases ◽  
Severe Disease ◽  
Pulmonary Involvement ◽  
Population Based ◽  
Vital Statistics ◽  
Drug Prescriptions ◽  
Malignant Neoplasms ◽  
Lower Survival ◽  
Treatment And Prevention

Abstract Background Systemic Sclerosis (SSc) is a chronic autoimmune disease with a complex pathogenesis that includes vascular injury, abnormal immune activation, and tissue fibrosis. We provided a complete epidemiological characterization of SSc in the Tuscany region (Italy), considering prevalence and incidence, survival, comorbidities and drug prescriptions, by using a multi-database population-based approach. Cases of SSc diagnosed between 1st January 2003 and 31st December 2017 among residents in Tuscany were collected from the population-based Rare Diseases Registry of Tuscany. All cases were linked to regional health and demographic databases to obtain information about vital statistics, principal causes of hospitalization, complications and comorbidities, and drug prescriptions. Results The prevalence of SSc in Tuscany population resulted to be 22.2 per 100,000, with the highest prevalence observed for the cases aged ≥ 65 years (33.2 per 100,000, CI 95% 29.6–37.3). In females, SSc was predominant (86.7% on the total) with an overall sex ratio F/M of 6.5. Nevertheless, males presented a more severe disease, with a lower survival and significant differences in respiratory complications and metabolic comorbidities. Complications and comorbidities such as pulmonary involvement (HR = 1.66, CI 95% 1.17–2.35), congestive heart failure (HR = 2.76, CI 95% 1.80–4.25), subarachnoid and intracerebral haemorrhage (HR = 2.33, CI 95% 1.21–4.48) and malignant neoplasms (HR = 1.63, CI 95% 1.06–2.52), were significantly associated to a lower survival, also after adjustment for age, sex and other SSc-related complications. Disease-modifying antirheumatic drugs, endothelin receptor antagonists, and phosphodiesterase-5 inhibitors were the drugs with the more increasing prevalence of use in the 2008–2017 period. Conclusions The multi-database approach is important in the investigation of rare diseases where it is often difficult to provide accurate epidemiological indicators. A population-based registry can be exploited in synergy with health databases, to provide evidence related to disease outcomes and therapies and to assess the burden of disease, relying on a large cohort of cases. Building an integrated archive of data from multiple databases linking a cohort of patients to their comorbidities, clinical outcomes and survival, is important both in terms of treatment and prevention.

scholarly journals POS1232 COVID-19 IN PATIENTS WITH SYSTEMIC SCLEROSIS: ONE RHEUMATOLOGY CENTER EXPERIENCE

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 899.2-899
Author(s):  
M. Starovoytova ◽  
O. Desinova ◽  
L. P. Ananyeva ◽  
O. Koneva ◽  
L. Garzanova ◽  
...  
Keyword(s):  
Systemic Sclerosis ◽  
Severe Disease ◽  
High Risk Group ◽  
Nasopharyngeal Swab ◽  
Frequent Use ◽  
Diffuse Form ◽  
Novel Coronavirus ◽  
Almost All ◽  
Dose Prednisone ◽  
Frequent Presence

Background:Severe Acute Respiratory Syndrome-Coronavirus-2 (SARS-CoV-2) virus infection or COVID-19 is a serious problem for patients with systemic autoimmune diseases Given the serious complications, including acute lung injury, patients with systemic sclerosis (SSc), especially SSs associated with interstitial lung disease (ILD), may represent a high risk group for infection and the development of severe COVID-19.Objectives:We present an analysis of the COVID-19 course and outcomes in 110 SSc pts.Methods:The study included 147 patients with SSc. The information was clarified by means of telephone survey after 10 months of the pandemic (December 2020). Covid-19 was diagnosed when confirmed by positive oral /nasopharyngeal swab, in the presence of positive antibodies and/or characteristic symptoms, and data from chest computed tomography (CT). 110 pts (77%) out of 147 patients in the SSc registry, gave the necessary information. COVID-19 was diagnosed in 59 pts (53 %). 42 pts (71%) had SSc-ILD. Pts mean age was 54.96 (s.d.11, min 31, max 79), 83% women (49 women and 10 men). 38 pts (65%) had a limited form of SSc, 15 (26%) pts had diffuse form SSc, 6% had overlap (SSc-polymyositis (PM) and SSc had rheumatoid arthritis (RA) and 3% had visceral form of SSc). All patients received low-dose prednisone, and more than half of the pts received immunosuppressive therapy. Rituximab therapy was performed in 24 pts (41%).Results:Almost all patients had positive swab from the oral cavity/nasopharynx. And only in 4 (7%) pts nasopharyngeal swabs were negative, in these patients specific antibodies and characteristic CT changes were detected. Chest CT was performed in 51 (86%) pts. Novel coronavirus pneumonia developed in the vast majority of pts - in 46 (78 %) pts. CT1 (up to 25% of lung lesions) had 10 (17%) pts, CT2 (25-50%) – 21(36%) pts, CT 3 (50-75%) – 15(25%) pts. In 5 (8.5%) pts no changes were detected on CT. The course of COVID-19 was mild and moderate (20 (34%) pts and 18 (31%) pts respectively), severe course was observed in 21 (35%) pts, including fatal in 12 (20%) pts. Among the deceased pts, only 1 patient with SSc-PM had not had ILD, but 7 patients had been treated with rituximab.Conclusion:SSc SARS-CoV-2-infected patients may be at risk of severe disease and mortality due to the frequent presence of ILD and the frequent use of immunosuppressive, including biological, therapy.Disclosure of Interests:None declared

Reasons for attending support groups and organizational preferences: A replication study using the North American Scleroderma Support Group Survey

2019 ◽  
Vol 4 (3) ◽  
pp. 173-186 ◽  
Author(s):  
Mia Pépin ◽  
Linda Kwakkenbos ◽  
Marie-Eve Carrier ◽  
Sandra Peláez ◽  
Ghassan El-Baalbaki ◽  
...  
Keyword(s):  
Social Support ◽  
Factor Analysis ◽  
Systemic Sclerosis ◽  
North America ◽  
Confirmatory Factor Analysis ◽  
Support Groups ◽  
Support Group ◽  
Factor Model ◽  
The United States ◽  
Confirmatory Factor

Peer-facilitated support groups are an important source for receiving disease-related information and support for people with systemic sclerosis (or scleroderma). A recent survey explored reasons for attending systemic sclerosis support groups in Europe and Australia and used exploratory factor analysis to group reasons for attendance into three main themes: (1) interpersonal and social support, (2) disease treatment and symptom management strategies, and (3) other aspects of living with systemic sclerosis. The objective of the present study was to replicate this study in a sample of patients from North America using confirmatory factor analysis. A 30-item survey was used to assess reasons for attendance and organizational preferences among systemic sclerosis patients in Canada and the United States. In total, 171 members completed the survey. In the confirmatory factor analysis, the three-factor model showed good fit to the data (χ2(399) = 646.0, p < 0.001, Tucker–Lewis index = 0.97, comparative fit index = 0.97, root mean square error approximation = 0.06). On average, respondents rated 22 (73%) of 30 items as “important” or “very important” reasons for attending support groups. Among organizational preferences, respondents emphasized the importance of the ability to share feelings and concerns, as well as educational aspects. Findings of our study suggest that reasons for attending support groups are similar for patients from Europe, Australia, and North America and that support groups should facilitate social support as well as disease education. These results inform the development of training programs for current and future systemic sclerosis support group leaders across the globe.

scholarly journals Premature Ejaculation in Urban Malaysian Population: The Associations between Erectile Dysfunction(ED), Anxiety and Depression

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Shamini Arasalingam ◽  
Hatta Sidi ◽  
Ng Chong Guan ◽  
Srijit Das ◽  
Marhani Midin ◽  
...  
Keyword(s):  
Erectile Dysfunction ◽  
Clinical Diagnosis ◽  
Premature Ejaculation ◽  
Strong Association ◽  
Depression Scale ◽  
Anxiety And Depression ◽  
Health Issues ◽  
Dsm V ◽  
Male Patients ◽  
The Relationship

Introduction: Both premature ejaculation(PE) and erectile dysfunction(ED) are prevalent sexual health disorders that have been inadequately investigated in Malaysia, a multiethnic and conservative nation.The objective of the study was to study the relationship between PE and ED, and other common mental health issues, i.e. anxiety and depression in Malaysian urban population. Methods: The diagnosis for PE was established by clinical diagnosis using DSM-5 and ISSM definition criteria for PE, whereas a diagnosis of ED was established by the International Index of Erectile Function (IIEF) questionnaire. Anxiety and depression levels were detected from the Hospital Anxiety and Depression Scale (HADS). Results: Based on DSM-V and ISSM clinical diagnosis for PE, the prevalence of PE was found to be 25%. Erectile dysfunction (p = 0.035, OR = 3.315, 95% CI 1.088, 10.103) and severe anxiety (p = 0.020, OR = 7.656, 95% CI 1.383, 42.396) significantly predicted presence of PE. Conclusion: There was a strong association between PE and ED and between PE and anxiety. Routine examination for PE in male patients should address the issue and the management of both ED and anxiety among PE patients, especially in an urban Malaysian clinical and medical care setting.

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