Abstracts tagged "Social support"

Abstract Number: 1178 • ACR Convergence 2023
Self-Perceived Knowledge of Myositis Among Social Media Respondents- a Pilot Study on Twitter
Srijan Mittal¹, Vanshita Batra¹, Parikshit Sen², Saadia Sasha Ali³, Arpit Mago⁴, Mark Russell⁵, Eugenia Gkiaouraki⁶ and Rohit Aggarwal⁶, ¹Maulana Azad Medical College, New Delhi, India, ²Maulana Azad Medical College, 2-Bahadurshah Zafar Marg, New Delhi, Delhi-110002, India., Dalhi, India, ³King's College Hospital, Epsom, United Kingdom, ⁴Jawaharlal Nehru Medical College, Belgaum, India, ⁵King's College Hospital, London, United Kingdom, ⁶University of Pittsburgh, Pittsburgh, PA
Background/Purpose: Myositis is a rare complex autoimmune disease that is less known and poorly understood, with increased effort required for education of practitioners, students, educators,…
Abstract Number: 1231 • ACR Convergence 2023
Successful Implementation of a Mental Health Screening Program for Youth with Juvenile Dermatomyositis
Y. Ingrid Goh¹, Kayla Baker¹, Audrey Bell-Peter¹, Vanessa Carbone¹, Brian Feldman¹, Luana Flores Pereira¹, Jayne MacMahon¹, Valerio Maniscalco¹, Jo-Anne Marcuz¹, Greta Mastrangelo², Tanya Slater¹, Kristi Whitney¹ and Andrea Knight¹, ¹The Hospital for Sick Children, Toronto, ON, Canada, ²Division of Rheumatology, Department of Paediatrics, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada
Background/Purpose: High levels of emotional distress have been reported in children with juvenile myositis (JM). Inadequate recognition of mental health concerns by healthcare providers (HCPs)…
Abstract Number: 1259 • ACR Convergence 2023
Voices Unheard: Unmasking the Hidden Challenges of Youth with Rheumatic Diseases
Natasha Trehan¹, Laurie Proulx² and Isabel Dukes³, ¹University of Ottawa, Take a Pain Check Foundation, Toronto, ON, Canada, ²Canadian Arthritis Patient Alliance, Ottawa, ON, Canada, ³CAPA & TAPC, Freelance, Ottawa, ON, Canada
Background/Purpose: Rheumatic disease doesn't merely present physical challenges—it also significantly impacts various psychological and social aspects of one's life, often disrupting academic progress, straining friendships,…
Abstract Number: 1262 • ACR Convergence 2023
“Somebody Who’s Been There and Can Understand the Challenges That You’re Going Through”: Participant Perspectives of a Resilience-Based Energy Management Online Intervention for Systemic Sclerosis with Peer Health Coaches
Yen Chen¹, Alexandra Harper², Tiffany Phanhdone³, Mary Alore¹, Sheri Hicks¹, Adam Pape¹, Gina Jay¹, Shannen Bolde¹, Jennie Feldpausch¹, Dinesh Khanna¹ and Susan Murphy⁴, ¹University of Michigan, Ann Arbor, MI, ²University of Michigan, Ypsilanti Charter Twp, MI, ³Northwestern University, Chicago, IL, ⁴University of Michigan, Plymouth, MI
Background/Purpose: People with systemic sclerosis (SSc) often experience fatigue, which impacts daily life functioning and quality of life. We developed a 12-week, resilience-based energy management…
Abstract Number: 1837 • ACR Convergence 2023
Depression and Suicide Attempt in Systemic Lupus Erythematosus with and Without Fibromyalgia
Irakli Tskhakaia¹, Pushti Khandwala¹ and Irene Tan², ¹Albert Einstein Medical Center Philadelphia, Philadelphia, PA, ²Einstein Medical Center Philadelphia, Bala Cynwyd, PA
Background/Purpose: Suicide and depression represent a high burden of morbidity and mortality worldwide. It is well known that fibromyalgia (FM) is associated with mood and…
Abstract Number: 1924 • ACR Convergence 2023
Impact of the COVID-19 Pandemic on Clinical and Psychosocial Features of Patients with UCTD
Caroline Siegel¹, Lucy Masto¹, Amaya Smole¹, Bessie Stamm¹, JoAnn Vega¹, Dongmei Sun¹, Deanna Jannat-Khah¹, Michael Lockshin², Lisa Sammaritano² and Medha Barbhaiya², ¹Hospital for Special Surgery, New York, NY, ²Hospital for Special Surgery, Weill Cornell Medicine, New York, NY
Background/Purpose: The early COVID-19 pandemic led to physical and psychological burdens for patients with systemic rheumatic diseases, whether or not they had had COVID-19. To…
Abstract Number: 2089 • ACR Convergence 2023
Social Listening Analysis of IgG4-Related Disease Social Media Discussions
Esteban Rivera¹, Kelly Gavigan², Daniel Hernandez³, Maria Picone⁴, Angeni Cordova⁴, Lauren Dougherty⁴, Kristina Davidson⁵, Brian LaMoreaux⁶, Anthony Amatucci⁷ and W. Benjamin Nowell⁸, ¹Global Healthy Living Foundation, Long Island City, NY, ²Global Healthy Living Foundation, Upper Nyack, NY, ³Global Healthy Living Foundation, St. Johns, FL, ⁴TREND Community, Philadelphia, PA, ⁵Horizon Therapeutics, Dublin, Ireland, ⁶Horizon Therapeutics, Deerfield, IL, ⁷Horizon Therapeutics, Cambridge, MA, ⁸Global Healthy Living Foundation, Nyack, NY
Background/Purpose: Immunogobulin G4-Related Disease (IgG4-RD) is a rare chronic immune-mediated fibroinflammatory disorder that often manifests with tumor-like masses and/or enlargement of multiple organs. In order…
Abstract Number: PP01 • ACR Convergence 2023
You Can’t Get This from a Doctor: The Role of Support Groups for Adults Aged 25-55 Living with Arthritis
Eileen Davidson, Global Healthy Living Foundation, Burnaby, BC, Canada
Background/Purpose: Living with a rheumatic condition comes with unique concerns specific to mental and social health like struggling with fatigue, anxiety, depression, and isolation, all…
Abstract Number: PP15 • ACR Convergence 2023
Toward a Frontier Beyond the Barriers of Position and Prejudice
Noriko Okochi¹, Eiji Oishi², Yuki Kojima³, Noro Takashi³, Mika Ishiguro³, Toshiko Ito-Ihara⁴ and YOSHIHIRO ARIMURA⁵, ¹Rheumatic Disease and Vasculitis Support Network Japan, Institute of Neuropsychiatry, Tokyo, Japan, ²Rheumatic Disease and Vasculitis Support Network Japan, UBE Frontier University, Yamaguchi, Japan, ³Rheumatic Disease and Vasculitis Support Network Japan, Shinagawa-Ku, Tokyo, Japan, ⁴Kyoto Prefectural University of Medicine, Rheumatic Disease and Vasculitis Support Network Japan, Kyoto, Japan, ⁵Kyorin University School of Medicine, Kichijoji Asahi Hospital, Rheumatic Disease and Vasculitis Support Network Japan, Mitaka-Shi, Tokyo, Japan
Background/Purpose: In Japan, firm boundaries exist between people from different walks of life surrounding diseases. 【Patients】Some patients are unable to assert themselves before doctors who…
Abstract Number: PP16 • ACR Convergence 2023
Peer Health Coaches Help Scleroderma Patients Cope with Isolation
Mary Alore¹, Yen Chen² and Susan Murphy³, ¹Troy, MI, ²University of Michigan, Ann Arbor, MI, ³University of Michigan, Plymouth, MI
Background/Purpose: In 2011, I felt extremely isolated with my new diagnosis of diffuse systemic sclerosis and sought support online and in support groups. In addition…
Abstract Number: PP17 • ACR Convergence 2023
Utilizing Support Networks to Improve Patient Outcomes
Brian Vogel, Lupus and Allied Diseases Association, Inc., San Diego, CA
Background/Purpose: In 2006, I realized I was gay and identified as LGBTQIA but did not come out. In 2008, I began experiencing chronic widespread pain,…
Abstract Number: PP22 • ACR Convergence 2022
Patients Raising Awareness for Patients – A Collaborative Partnership Between Take a Pain Check Foundation and Canadian Arthritis Patient Alliance
Natasha Trehan¹ and Laurie Proulx², ¹Take a Pain Check Foundation, Markham, ON, Canada, ²Canadian Arthritis Patient Alliance, Ottawa, ON, Canada
Background/Purpose: Juvenile Idiopathic Arthritis is a chronic disease that affects a child's school life and relationships, creating social isolation for youth and young adults. Take…
Abstract Number: 0114 • ACR Convergence 2022
Addressing Healthcare Disparities Through Implementation of a Medical Student-Based Patient Navigator Program
Grace Shadid¹, Zaid Nakadar¹, Miar Elaskandrany¹, Huchong Cai¹, Alejandra Moncayo¹, Ayten Sergios¹, Marcos Vargas¹, Jeremy Wilson¹, Naureen Kabani², Olga Dvorkina¹ and Ellen M. Ginzler², ¹SUNY Downstate Health Sciences University, Brooklyn, NY, ²SUNY Downstate Health Sciences University, Department of Medicine, Brooklyn, NY
Background/Purpose: African American, Afro-Caribbean, and Hispanic patients diagnosed with rheumatic diseases such as systemic lupus erythematosus (SLE) exhibit more severe disease manifestations compared to white…
Abstract Number: 0181 • ACR Convergence 2022
Patient Perspective of Unique Support and Education Needs of Latinx/Latino(a)/Hispanic Rheumatoid Arthritis Patients: Implications for a Culturally Tailored and Disease Specific Intervention
Anna Balakrishnan¹, Adena Batterman¹, Daniel Hernandez², Angel Tapia³, Joan Westreich¹, Roberta Horton¹ and Theodore Fields¹, ¹Hospital for Special Surgery, New York, NY, ²Global Healthy Living Foundation, Nyack, NY, ³Global Healthy Living Foundation, Upper Nyack, NY
Background/Purpose: Health disparities for Latinx RA patients, including higher pain, fatigue, disability, and risk for depression are well documented.1, 2, 3, 4 Support and education…
Abstract Number: 0183 • ACR Convergence 2022
LupusConnect™: A 24/7 Online Lupus Support Community
Leticia Ocana, Ashley Holden and Daria McClamb, Lupus Foundation of America, Washington, DC
Background/Purpose: A Lupus Foundation of America (LFA) National Needs Assessment Survey in 2015 with 3402 lupus patients and caregivers found that the number one need…

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