Patient-reported outcome instruments for assessing Raynaud’s phenomenon in systemic sclerosis: A SCTC vascular working group report

Author:

Pauling John D12,Frech Tracy M3,Hughes Michael4,Gordon Jessica K5,Domsic Robyn T6,Anderson Marina E7,Ingegnoli Francesca8,McHugh Neil J12,Johnson Sindhu R910,Hudson Marie11,Boin Francesco12,Ong Voon H13,Matucci-Cerinic Marco14,Altorok Nezam15,Scolnik Marina16,Nikpour Mandana17,Shah Ankoor18,Pope Janet E19,Khanna Dinesh20,Herrick Ariane L421

Affiliation:

1. Royal National Hospital for Rheumatic Diseases, Bath, UK

2. Department of Pharmacy & Pharmacology, University of Bath, Bath, UK

3. University of Utah and Salt Lake Regional Veterans Affair Medical Center, Salt Lake City, UT, USA

4. Centre for Musculoskeletal Research, The University of Manchester and Salford Royal NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK

5. Hospital for Special Surgery, New York, USA

6. University of Pittsburgh Medical Center, Pittsburgh, PA, USA

7. Institute of Ageing and Chronic Disease, Faculty of Health and Life Science, University of Liverpool and Aintree University Hospital, Liverpool, UK

8. Division of Rheumatology, Department of Clinical Sciences and Community Health, University of Milan, Milan, Italy

9. Toronto Scleroderma Program, Toronto Western Hospital, Mount Sinai Hospital, Toronto, ON, Canada

10. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada

11. Jewish General Hospital, Lady Davis Institute and McGill University, Montreal, QC, Canada

12. UCSF Scleroderma Center, University of California San Francisco, San Francisco, CA, USA

13. University College London Medical School, Royal Free Hospital, London, UK

14. Division of Rheumatology, University of Florence, Florence, Italy

15. University of Toledo Medical Center, Toledo, OH, USA

16. Rheumatology Section, Hospital Italiano de Buenos Aires, Buenos Aires, Argentina

17. The University of Melbourne and St. Vincent’s Hospital, Melbourne, VIC, Australia

18. Duke University Medical Center, Durham, NC, USA

19. Western University, London, ON, Canada

20. University of Michigan Scleroderma Program, Ann Arbor, MI, USA

21. NIHR Manchester Musculoskeletal Biomedical Research Centre, Central Manchester NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK

Abstract

The episodic nature of Raynaud’s phenomenon in systemic sclerosis has led to a reliance on patient-reported outcome instruments such as the Raynaud’s Condition Score diary. Little is known about the utilization in routine clinical practice and health professional attitudes toward existing patient-reported outcome instruments for assessing systemic sclerosis-Raynaud’s phenomenon. Members of the Scleroderma Clinical Trials Consortium Vascular Working Group (n = 28) were invited to participate in a survey gauging attitudes toward the Raynaud’s Condition Score diary and the perceived need for novel patient-reported outcome instruments for assessing patient-reported outcome. Nineteen Scleroderma Clinical Trials Consortium Vascular Working Group members (68% response rate) from academic units based in North America (n = 9), Europe (n = 8), South America (n = 1) and Australasia (n = 1) took part in the survey. There was broad consensus that Raynaud’s Condition Score diary returns could be influenced by factors including seasonal variation in weather, efforts made by patients to avoid or ameliorate attacks of Raynaud’s phenomenon, habituation to Raynaud’s phenomenon symptoms, evolution of Raynaud’s phenomenon symptom characteristics with progressive obliterative microangiopathy, patient-coping strategies, respondent burden and placebo effect. There was consensus that limitations of the Raynaud’s Condition Score diary might be a barrier to drug development (79% of respondents agree/strongly agree) and that a novel patient-reported outcome instrument for assessing systemic sclerosis-Raynaud’s phenomenon should be developed with the input of both clinicians and patients (84% agree/strongly agree). Perceived potential limitations of the Raynaud’s Condition Score diary have been identified along with concerns that such factors might impede drug development programs for systemic sclerosis-Raynaud’s phenomenon. There is support within the systemic sclerosis community for the development of a novel patient-reported outcome instrument for assessing systemic sclerosis-Raynaud’s phenomenon.

Publisher

SAGE Publications

Subject

Immunology,Rheumatology,Immunology and Allergy

Cited by 37 articles. 订阅此论文施引文献 订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献

同舟云学术

1.学者识别学者识别

2.学术分析学术分析

3.人才评估人才评估

"同舟云学术"是以全球学者为主线,采集、加工和组织学术论文而形成的新型学术文献查询和分析系统,可以对全球学者进行文献检索和人才价值评估。用户可以通过关注某些学科领域的顶尖人物而持续追踪该领域的学科进展和研究前沿。经过近期的数据扩容,当前同舟云学术共收录了国内外主流学术期刊6万余种,收集的期刊论文及会议论文总量共计约1.5亿篇,并以每天添加12000余篇中外论文的速度递增。我们也可以为用户提供个性化、定制化的学者数据。欢迎来电咨询!咨询电话:010-8811{复制后删除}0370

www.globalauthorid.com

TOP

Copyright © 2019-2024 北京同舟云网络信息技术有限公司
京公网安备11010802033243号  京ICP备18003416号-3