Abstracts tagged "Quality of life and scleroderma"

Abstract Number: 1422 • 2018 ACR/ARHP Annual Meeting
Impact of Juvenile Localized Scleroderma on Longitudinal Quality of Life
Vidya Sivaraman¹, Kathryn S. Torok², Melissa Moore-Clingenpeel³, Fatma Dedeoglu⁴, Polly Ferguson⁵, Elena Pope⁶, Thomas G. Mason II⁷, Mara L Becker⁸, Gloria Higgins⁹, C. Egla Rabinovich¹⁰, Sandy Hong¹¹, Maria Ibarra¹², Ronald M. Laxer¹³, Robert Fuhlbrigge¹⁴, Katie Stewart¹⁵, Marilynn Punaro¹⁶ and Suzanne Li¹⁷, ¹Nationwide Children’s Hospital and The Ohio State University, Columbus, OH, ²Pediatric Rheumatology, University of Pittsburgh Med Ctr, Pittsburgh, PA, ³Research, Nationwide Children's Hospital, Dublin, OH, ⁴Rheumatology, Boston Children's Hospital, Boston, MA, ⁵Pediatrics, University of Iowa, Iowa City, IA, ⁶Section of Dermatology, The Hospital for Sick Children, Hospital for Sick Children, Toronto, ON, Canada, ⁷Division of Rheumatology - Department of Medicine, Mayo Clinic Rochester, Rochester, MN, ⁸Rheumatology, Children's Mercy Kansas City, Kansas City, MO, ⁹Pediatrics and Rheumatology, Nationwide Children's Hospital and The Ohio State University, Columbus, OH, ¹⁰Duke University Medical Center, Durham, NJ, ¹¹Pediatrics-Rheumatology, U of Iowa Children's Hosp, Iowa City, IA, ¹²Children's Mercy Hospital, Kansas City, MO, Kansas City, MO, ¹³Div of Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, ¹⁴Children's Hospital Colorado, Aurora, CO, ¹⁵UT Southwestern, Dallas, TX, ¹⁶Texas Scottish Rite Hospital for Children, Dallas, TX, ¹⁷Pediatrics, Hackensack University Medical Center, Hackensack, NJ
Background/Purpose: Juvenile localized scleroderma (jLS) is a chronic autoimmune disease, with cutaneous and extra-cutaneous manifestations (ECM) requiring long-term immunosuppressive therapy. Few studies have evaluated the…
Abstract Number: 1284 • 2017 ACR/ARHP Annual Meeting
The Localized Scleroderma Quality of Life Instrument (LoSQI): Initial Validation in Pediatric Localized Scleroderma
Christina K. Zigler¹, Kaveh Ardalan², Kaila Schollaert-Fitch³, Heidi Jacobe⁴ and Kathryn S. Torok³, ¹Physical Medicine & Rehabilitation, University of Pittsburgh, Pittsburgh, PA, ²Division of Rheumatology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, ³Pediatric Rheumatology, University of Pittsburgh Med Ctr, Pittsburgh, PA, ⁴Department of Dermatology, University of Texas Southwestern Medical Center, Dallas, TX
Background/Purpose: There is a current need to integrate health related quality of life (HRQoL) into outcomes for clinical trials (Chang & Reeve, 2005). For pediatric…
Abstract Number: 1285 • 2017 ACR/ARHP Annual Meeting
Extracutaneous Involvement Is Common in Juvenile Localized Scleroderma and Associated with a Higher Level of Perceived Disease Impact
Suzanne C. Li¹, Tracy Andrews², Mallory Chen³, Kathryn S. Torok⁴, Elena Pope⁵, Katie G. Stewart⁶, Gloria C. Higgins⁷, C. Egla Rabinovich⁸, Ronald M. Laxer⁹, Kathleen Haines¹⁰, Marilynn Punaro¹¹, Heidi Jacobe¹² and Kathleen O'Neil¹³, ¹Pediatrics, Joseph M Sanzari Children's Hospital, Hackensack Meridian Health, Hackensack, NJ, ²Research, Hackensack University Medical Center, Hackensack Meridian Health, Hackensack, NJ, ³Williams College, williamstown, MA, ⁴Pediatric Rheumatology, University of Pittsburgh Med Ctr, Pittsburgh, PA, ⁵Section of Dermatology, The Hospital for Sick Children, Hospital for Sick Children, Toronto, ON, Canada, ⁶Pediatric Rheumatology, Texas Scottish Rite Hospital, Dallas, TX, ⁷Pediatric Rheumatology Ohio State University, Nationwide Childrens Hospital, Columbus, OH, ⁸Pediatric Rheumatology, Duke University Medical Center, Durham, NC, ⁹Div of Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, ¹⁰Joseph M Sanzari Children’s Hospital, Hackensack Meridian Health, Hackensack, NJ, ¹¹Texas Scottish Rite Hospital for Children, Dallas, TX, ¹²Department of Dermatology, University of Texas Southwestern Medical Center, Dallas, TX, ¹³Pediatric Rheumatology, RIley Hospital for Children, Indianapolis, IN
Background/Purpose: Juvenile localized scleroderma (jLS) is often associated with deep tissue and extracutaneous involvement (ECI), putting children at risk for severe morbidity such as hemiatrophy,…
Abstract Number: 2392 • 2016 ACR/ARHP Annual Meeting
Establishing Quality of Life Content Domains in Pediatric Localized Scleroderma
Christina K. Zigler¹, Kaveh Ardalan² and Kathryn S. Torok³, ¹University of Pittsburgh, Pittsburgh, PA, ²Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, ³Pediatric Rheumatology, Univ of Pittsburgh Med Ctr, Pittsburgh, PA
Background/Purpose: Localized scleroderma (LS) can affect patients' physical function and psychosocial well-being, but, published studies of the impact of pediatric LS on health-related quality of…
Abstract Number: 2912 • 2016 ACR/ARHP Annual Meeting
Performance of the Patient-Reported Outcomes Measurement Information System (PROMIS) 29 in Systemic Sclerosis -Associated Interstitial Lung Disease (SSc-ILD)
Caitlyn Fisher^1,2, Rajaie Namas³, Amber Young², Holly Wilhalme⁴ and Dinesh Khanna⁵, ¹Cognitive Science / Creative Writing, Beloit College, Beloit, WI, ²Department of Internal Medicine, Division of Rheumatology, University of Michigan, Ann Arbor, MI, ³Department of Medicine [Division of Rheumatology], University of Michigan, Ann Arbor, MI, ⁴University of California, Los Angeles, David Geffen School of Medicine, Los Angeles, CA, ⁵University of Michigan, Ann Arbor, MI
Background/Purpose: PROMIS-29 is a generic health-related quality of life (HRQoL) instrument that was developed as part of the NIH Patient Reported Outcomes (PROs) Roadmap. Our…
Abstract Number: 2540 • 2015 ACR/ARHP Annual Meeting
Construct Validity of the Promis-29 in Systemic Sclerosis: Results from the Scleroderma Patient-Centered Intervention Network (SPIN) Cohort
Linda Kwakkenbos¹, Brett D. Thombs¹, Susan J. Bartlett², Marie-Eve Carrier³, Marie Hudson¹, Luc Mouthon⁴, Vanessa L. Malcarne⁵, Maureen Sauvé⁶, Dinesh Khanna⁷ and SPIN investigators, ¹McGill University, Montreal, QC, Canada, ²Medicine, McGill University, Montreal, QC, Canada, ³Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada, ⁴Paris Descartes University, UPRES-EA 4058, Department of Internal Medicine, Cochin Hospital, Paris, France, ⁵SDSU/UC San Diego Joint Doctoral Program in Clinical Psychology, San Diego, CA, ⁶Scleroderma Societies of Canada and Ontario, Hamilton, QC, Canada, ⁷Division of Rheumatology, University of Michigan, Ann Arbor, MI
Background/Purpose: The Patient-Reported Outcomes Measurement Information System (PROMIS¨) initiative is a cooperative research program designed to develop, evaluate, and standardize item banks to measure patient-reported…
Abstract Number: 3263 • 2015 ACR/ARHP Annual Meeting
The Promis-29 in Systemic Sclerosis: Associations with Clinical Characteristics in the Scleroderma Patient-Centered Intervention Network (SPIN) Cohort
Linda Kwakkenbos^1,2, Brett D. Thombs¹, Susan J. Bartlett^3,4, Marie-Eve Carrier², Marie Hudson¹, Luc Mouthon⁵, Vanessa L. Malcarne⁶, Maureen Sauvé⁷, Dinesh Khanna⁸ and SPIN investigators, ¹McGill University, Montreal, QC, Canada, ²Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada, ³Medicine , Divisions of Clinical Epidemiology, Rheumatology, Respirology, McGill University, Montreal, QC, Canada, ⁴Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, MD, ⁵Paris Descartes University, UPRES-EA 4058, Department of Internal Medicine, Cochin Hospital, Paris, France, ⁶SDSU/UC San Diego Joint Doctoral Program in Clinical Psychology, San Diego, CA, ⁷Scleroderma Societies of Canada and Ontario, Hamilton, QC, Canada, ⁸Division of Rheumatology, University of Michigan, Ann Arbor, MI
Background/Purpose: Systemic sclerosis (SSc) has far-reaching physical consequences and impacts health-related quality of life. The Patient-Reported Outcomes Measurement Information System (PROMIS)-29 measure includes four items…
Abstract Number: 2176 • 2013 ACR/ARHP Annual Meeting
Relationships Between Physician and Patient Scored Clinical Outcome Measures In Pediatric Localized Scleroderma
Kaveh Ardalan, Christina Kelsey and Kathryn S. Torok, Pediatric Rheumatology, Scleroderma Center of Pittsburgh, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA
Background/Purpose: Pediatric localized scleroderma (LS) is an autoimmune disease of the skin and underlying tissue leading to sclerosis and complications such as joint contractures. The…
Abstract Number: 93 • 2012 ACR/ARHP Annual Meeting
Health State Utilities in Systemic Sclerosis: Results From the UCLA Scleroderma Quality of Life Study
Mohsen Sadatsafavi¹, Dinesh Khanna², Paul Maranian³, Daniel Furst⁴, Amir Khakban¹ and Carlo A. Marra¹, ¹Pharm Sciences, Univ of British Columbia, Vancouver, BC, Canada, ²Division of Rheumatology, University of Michigan Medical Center, Ann Arbor, MI, ³Division of Rheumatology, UCLA Medical School, Los Angeles, CA, ⁴David Geffen School of Medicine, Div of Rheumatology, University of California at Los Angeles, Los Angeles, CA
Background/Purpose: Health state utility values (HSUVs) are used as weightings for quality-adjusted life years (QALYs) in economic analyses. It is not clear whether available instruments…

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