Literature DB >> 24623563

Patient involvement in outcome measures for psoriatic arthritis.

William Tillett1, Ade Adebajo, Mel Brooke, Willemina Campbell, Laura C Coates, Oliver FitzGerald, Laure Gossec, Philip Helliwell, Sarah Hewlett, Jana James, Patricia Minnock, Aisling Reast, Dennis O'Sullivan, Maarten de Wit, Neil McHugh.   

Abstract

Psoriatic arthritis (PsA) is a heterogeneous inflammatory arthritis with a varied clinical phenotype. There has been considerable international collaboration over recent years to develop and prioritise appropriate disease domains and outcome measures to capture all aspects of this complex disease. It has been recognised that patient-reported measures and physician assessments are complementary and, when used together, allow an improved reflection of disease burden. Taking this concept one step further, the experience in rheumatoid arthritis has demonstrated benefits of incorporating the patient perspective in the development of outcome measures. We report a systematic review demonstrating (1) that there has been little incorporation of the patient perspective in the development of outcome measures and domains in PsA, (2) the proceedings from the preliminary patient involvement in outcome measures for PsA (PIOMPSA) meetings, and (3) a proposed roadmap for improving patient involvement.

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Year:  2014        PMID: 24623563     DOI: 10.1007/s11926-014-0418-7

Source DB:  PubMed          Journal:  Curr Rheumatol Rep        ISSN: 1523-3774            Impact factor:   4.592


  75 in total

1.  Testing scaling assumptions, reliability and validity of medical outcomes study short-form 36 health survey in psoriatic arthritis.

Authors:  Ying Ying Leung; Kwok Wah Ho; Tracy Y Zhu; Lai Shan Tam; Emily Wai-Lin Kun; Edmund Kwok-Ming Li
Journal:  Rheumatology (Oxford)       Date:  2010-04-25       Impact factor: 7.580

Review 2.  OMERACT 7 psoriatic arthritis workshop: synopsis.

Authors:  D D Gladman; V Strand; P J Mease; C Antoni; P Nash; A Kavanaugh
Journal:  Ann Rheum Dis       Date:  2005-03       Impact factor: 19.103

3.  The application of multiple quality-of-life instruments in individuals with mild-to-moderate psoriasis.

Authors:  M B Nichol; J E Margolies; E Lippa; M Rowe; J Quell
Journal:  Pharmacoeconomics       Date:  1996-12       Impact factor: 4.981

4.  Development of an assessment tool for dactylitis in patients with psoriatic arthritis.

Authors:  Philip S Helliwell; Jill Firth; Gamal H Ibrahim; Richard D Melsom; Irfan Shah; Deborah E Turner
Journal:  J Rheumatol       Date:  2005-09       Impact factor: 4.666

5.  Validating the SF-36 health survey questionnaire in patients with psoriatic arthritis.

Authors:  J A Husted; D D Gladman; V T Farewell; J A Long; R J Cook
Journal:  J Rheumatol       Date:  1997-03       Impact factor: 4.666

6.  A Simplified Psoriasis Area Severity Index (SPASI) for rating psoriasis severity in clinic patients.

Authors:  B Asher Louden; Daniel J Pearce; Wei Lang; Steven R Feldman
Journal:  Dermatol Online J       Date:  2004-10-15

7.  Patient global assessment in psoriatic arthritis: a multicenter GRAPPA and OMERACT study.

Authors:  Alberto Cauli; Dafna D Gladman; Alessandro Mathieu; Ignazio Olivieri; Giovanni Porru; Paul P Tak; Claudia Sardu; Ilona Ujfalussy; Raffaele Scarpa; Antonio Marchesoni; William J Taylor; Antonio Spadaro; Jose L Fernàndez-Sueiro; Carlo Salvarani; Joachim R Kalden; Ennio Lubrano; Sueli Carneiro; Francesca Desiati; John A Flynn; Salvatore D'Angelo; Alessandra Vacca; Arno W R VAN Kuijk; Maria Grazia Catanoso; Mathias Gruenke; Rosario Peluso; Wendy J Parsons; Nicola Ferrara; Paolo Contu; Philip S Helliwell; Philip J Mease
Journal:  J Rheumatol       Date:  2011-02-15       Impact factor: 4.666

8.  Could the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) be a valid measure of disease activity in patients with psoriatic arthritis?

Authors:  William J Taylor; Andrew A Harrison
Journal:  Arthritis Rheum       Date:  2004-06-15

9.  Health care utilization in patients with spondyloarthropathies.

Authors:  J A Singh; V Strand
Journal:  Rheumatology (Oxford)       Date:  2009-01-16       Impact factor: 7.580

10.  A longitudinal study of the effect of disease activity and clinical damage on physical function over the course of psoriatic arthritis: Does the effect change over time?

Authors:  Janice A Husted; Brian D Tom; Vernon T Farewell; Catherine T Schentag; Dafna D Gladman
Journal:  Arthritis Rheum       Date:  2007-03
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  13 in total

Review 1.  Framework for Advancing the Reporting of Patient Engagement in Rheumatology Research Projects.

Authors:  Clayon B Hamilton; Jenny C Leese; Alison M Hoens; Linda C Li
Journal:  Curr Rheumatol Rep       Date:  2017-07       Impact factor: 4.592

Review 2.  Patient-Reported Outcomes in Psoriatic Arthritis.

Authors:  Ana-Maria Orbai; Alexis Ogdie
Journal:  Rheum Dis Clin North Am       Date:  2016-03-16       Impact factor: 2.670

3.  Using PROMs in Healthcare: Who Should Be in the Driving Seat-Policy Makers, Health Professionals, Methodologists or Patients?

Authors:  Kirstie L Haywood; Roger Wilson; Sophie Staniszewska; Sam Salek
Journal:  Patient       Date:  2016-12       Impact factor: 3.883

4.  Report of the GRAPPA-OMERACT Psoriatic Arthritis Working Group from the GRAPPA 2015 Annual Meeting.

Authors:  Ana-Maria Orbai; Philip J Mease; Maarten de Wit; Umut Kalyoncu; Willemina Campbell; William Tillett; Lihi Eder; Musaab Elmamoun; Oliver FitzGerald; Dafna D Gladman; Niti Goel; Laure Gossec; Chris A Lindsay; Ingrid Steinkoenig; Philip S Helliwell; Neil J McHugh; Vibeke Strand; Alexis Ogdie
Journal:  J Rheumatol       Date:  2016-05       Impact factor: 4.666

5.  Systematic literature review of domains assessed in psoriatic arthritis to inform the update of the psoriatic arthritis core domain set.

Authors:  Umut Kalyoncu; Alexis Ogdie; Willemina Campbell; Clifton O Bingham; Maarten de Wit; Dafna D Gladman; Philip Mease; Ingrid Steinkoenig; Vibeke Strand; Victoria G Riese; Ana-Maria Orbai
Journal:  RMD Open       Date:  2016-03-03

Review 6.  Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO).

Authors:  Maarten de Wit; Cyrus Cooper; Peter Tugwell; Nathalie Bere; John Kirwan; Philip G Conaghan; Charlotte Roberts; Isabelle Aujoulat; Nasser Al-Daghri; Islene Araujo de Carvalho; Mary Barker; Nicola Bedlington; Maria Luisa Brandi; Olivier Bruyère; Nansa Burlet; Philippe Halbout; Mickaël Hiligsmann; Famida Jiwa; John A Kanis; Andrea Laslop; Wendy Lawrence; Daniel Pinto; Concepción Prieto Yerro; Véronique Rabenda; René Rizzoli; Marieke Scholte-Voshaar; Mila Vlaskovska; Jean-Yves Reginster
Journal:  Aging Clin Exp Res       Date:  2019-04-16       Impact factor: 3.636

7.  Patient participation as an integral part of patient-reported outcomes development ensures the representation of the patient voice: a case study from the field of rheumatology.

Authors:  M P T de Wit; T K Kvien; L Gossec
Journal:  RMD Open       Date:  2015-08-05

8.  Important Treatment Outcomes for Patients with Psoriatic Arthritis: A Multisite Qualitative Study.

Authors:  Emma Dures; Sarah Hewlett; Jane Lord; Clive Bowen; Neil McHugh; William Tillett
Journal:  Patient       Date:  2017-08       Impact factor: 3.883

9.  Development of a national survey on foot involvement among people with psoriatic arthritis in Australia using a best practice approach: a survey development protocol.

Authors:  Kate Carter; Steven Walmsley; Keith Rome; Deborah E Turner
Journal:  J Foot Ankle Res       Date:  2020-08-26       Impact factor: 2.303

10.  Conducting research in psoriatic arthritis: the emerging role of patient research partners.

Authors:  Niti Goel
Journal:  Rheumatology (Oxford)       Date:  2020-03-01       Impact factor: 7.580

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