Patient Participation in Psoriasis and Psoriatic Arthritis Outcome Research: A Report from the GRAPPA 2013 Annual Meeting

被引：15

作者：

de Wit, Maarten

Campbell, Willemina

FitzGerald, Oliver ^{[1
]}

Gladman, Dafna D. ^{[2
,3
,4
]}

Helliwell, Phillip S. ^{[5
]}

James, Jana

Lindsay, Chris

MacDonald, Roland

McHugh, Neil J. ^{[6
]}

Mease, Philip J. ^{[7
]}

Orbai, Ana-Maria ^{[8
]}

Palominos, Penelope ^{[9
]}

Parkinson, Andrew

Tillett, William ^{[10
]}

Goel, Niti

机构：

[1] St Vincents Univ Hosp, Dept Rheumatol, Dublin 4, Ireland

[2] Univ Toronto, Toronto, ON, Canada

[3] Toronto Western Res Inst, Toronto, ON, Canada

[4] Univ Hlth Network, Psoriat Arthrit Program, Toronto, ON, Canada

[5] Univ Leeds, Leeds, W Yorkshire, England

[6] UK Natl Hlth Serv NHS Fdn Trust, Royal Natl Hosp Rheumat Dis, Bath, Avon, England

[7] Univ Washington, Sch Med, Swedish Med Ctr, Seattle, WA USA

[8] Johns Hopkins Arthrit Ctr, Baltimore, MD USA

[9] Hosp Clin Porto Alegre, Dept Rheumatol, Porto Alegre, RS, Brazil

[10] Royal Natl Hosp Rheumat Dis, Bath BA1 1RL, Avon, England

来源：

JOURNAL OF RHEUMATOLOGY | 2014年 / 41卷 / 06期

关键词：

OUTCOME RESEARCH; PSORIATIC ARTHRITIS; PATIENT RESEARCH PARTNER; PATIENT-REPORTED OUTCOMES; PATIENT INVOLVEMENT; COMPOSITE DISEASE-ACTIVITY; QUALITY-OF-LIFE; RHEUMATOID-ARTHRITIS; BELIEFS; DOMAINS; INVOLVEMENT; CONSENSUS; HEALTH;

D O I：

10.3899/jrheum.140171

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

For the first time, 8 patients with psoriatic arthritis (PsA) participated as full delegates at the 2013 Annual Meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA). Patients were invited to provide their perspective for different sessions of the conference program. Before the conference, the patient delegates had a separate meeting to familiarize themselves with the conference program and to gain a better understanding of the vision and objectives of GRAPPA. During the conference, the patient group discussed options for increased involvement in research projects. Herein we summarize the presentations on patient participation in research, the experiences of the patient group, and plans to enhance the patient perspective in psoriasis and PsA research.

引用

页码：1206 / 1211

页数：6

共 32 条

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[Anonymous], 2009, GUID IND PAT REP OUT

[2]

Barton JL, 2009, PATIENT PREFER ADHER, V3, P335

[3] Differences in the Patient's and the Physician's Perspective of Disease in Psoriatic Arthritis [J].