The patient experience of Raynaud's phenomenon in systemic sclerosis

John D Pauling; Lesley Ann Saketkoo; Marco Matucci-Cerinic; Francesca Ingegnoli; Dinesh Khanna

doi:10.1093/rheumatology/key026

The patient experience of Raynaud's phenomenon in systemic sclerosis

John D Pauling
, Lesley Ann Saketkoo
, Marco Matucci-Cerinic
, Francesca Ingegnoli
, Dinesh Khanna

Department of Life Sciences

Royal National Hospital for Rheumatic Diseases
Tulane University
University of Florence
University of Milan
University of Michigan

Research output: Contribution to journal › Review article › peer-review

59 Citations (SciVal)

177 Downloads (Pure)

Abstract

RP is the most common manifestation of SSc and a major cause of disease-related morbidity. This review provides a detailed appraisal of the patient experience of SSc-RP and potential implications for disease classification, patient-reported outcome instrument development and SSc-RP clinical trial design. The review explores the clinical features of SSc-RP, the severity and burden of SSc-RP symptoms and the impact of SSc-RP on function, work and social participation, body image dissatisfaction and health-related quality of life in SSc. Where management of SSc-RP is concerned, the review focuses on the 'patient experience' of interventions for SSc-RP, examining geographic variation in clinical practice and potential barriers to the adoption of treatment recommendations concerning best-practice management of SSc-RP. Knowledge gaps are highlighted that could form the focus of future research. A more thorough understanding of the patient experience could support the development of novel reported outcome instruments for assessing SSc-RP.

Original language	English
Article number	key026
Pages (from-to)	18-26
Number of pages	9
Journal	Rheumatology
Volume	58
Issue number	1
Early online date	12 Mar 2018
DOIs	https://doi.org/10.1093/rheumatology/key026
Publication status	Published - 1 Jan 2019

Keywords

Disability
Function
Health-related quality of life
Impact
Patient experience
Raynaud's phenomenon
Systemic sclerosis
Humans
Male
Social Participation/psychology
Body Image/psychology
Quality of Life
Adult
Female
Scleroderma, Systemic/complications
Raynaud Disease/etiology

ASJC Scopus subject areas

Pharmacology (medical)
Rheumatology

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10.1093/rheumatology/key026

1366.R1_Accepted_Manuscript
This is a pre-copyedited, author-produced version of an article accepted for publication in Rheumatology following peer review. The version of recordJohn D Pauling, Lesley Ann Saketkoo, Marco Matucci-Cerinic, Francesca Ingegnoli, Dinesh Khanna; The patient experience of Raynaud’s phenomenon in systemic sclerosis, Rheumatology, key026, is available online at: https://doi.org/10.1093/rheumatology/key026.
Accepted author manuscript, 501 KB

Cite this

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title = "The patient experience of Raynaud's phenomenon in systemic sclerosis",

abstract = "RP is the most common manifestation of SSc and a major cause of disease-related morbidity. This review provides a detailed appraisal of the patient experience of SSc-RP and potential implications for disease classification, patient-reported outcome instrument development and SSc-RP clinical trial design. The review explores the clinical features of SSc-RP, the severity and burden of SSc-RP symptoms and the impact of SSc-RP on function, work and social participation, body image dissatisfaction and health-related quality of life in SSc. Where management of SSc-RP is concerned, the review focuses on the 'patient experience' of interventions for SSc-RP, examining geographic variation in clinical practice and potential barriers to the adoption of treatment recommendations concerning best-practice management of SSc-RP. Knowledge gaps are highlighted that could form the focus of future research. A more thorough understanding of the patient experience could support the development of novel reported outcome instruments for assessing SSc-RP.",

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AU - Pauling, John D

AU - Saketkoo, Lesley Ann

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AU - Ingegnoli, Francesca

AU - Khanna, Dinesh

PY - 2019/1/1

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N2 - RP is the most common manifestation of SSc and a major cause of disease-related morbidity. This review provides a detailed appraisal of the patient experience of SSc-RP and potential implications for disease classification, patient-reported outcome instrument development and SSc-RP clinical trial design. The review explores the clinical features of SSc-RP, the severity and burden of SSc-RP symptoms and the impact of SSc-RP on function, work and social participation, body image dissatisfaction and health-related quality of life in SSc. Where management of SSc-RP is concerned, the review focuses on the 'patient experience' of interventions for SSc-RP, examining geographic variation in clinical practice and potential barriers to the adoption of treatment recommendations concerning best-practice management of SSc-RP. Knowledge gaps are highlighted that could form the focus of future research. A more thorough understanding of the patient experience could support the development of novel reported outcome instruments for assessing SSc-RP.

AB - RP is the most common manifestation of SSc and a major cause of disease-related morbidity. This review provides a detailed appraisal of the patient experience of SSc-RP and potential implications for disease classification, patient-reported outcome instrument development and SSc-RP clinical trial design. The review explores the clinical features of SSc-RP, the severity and burden of SSc-RP symptoms and the impact of SSc-RP on function, work and social participation, body image dissatisfaction and health-related quality of life in SSc. Where management of SSc-RP is concerned, the review focuses on the 'patient experience' of interventions for SSc-RP, examining geographic variation in clinical practice and potential barriers to the adoption of treatment recommendations concerning best-practice management of SSc-RP. Knowledge gaps are highlighted that could form the focus of future research. A more thorough understanding of the patient experience could support the development of novel reported outcome instruments for assessing SSc-RP.

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KW - Function

KW - Health-related quality of life

KW - Impact

KW - Patient experience

KW - Raynaud's phenomenon

KW - Systemic sclerosis

KW - Humans

KW - Male

KW - Social Participation/psychology

KW - Body Image/psychology

KW - Quality of Life

KW - Adult

KW - Female

KW - Scleroderma, Systemic/complications

KW - Raynaud Disease/etiology

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SN - 1462-0324

VL - 58

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JO - Rheumatology

JF - Rheumatology

IS - 1

M1 - key026

ER -

The patient experience of Raynaud's phenomenon in systemic sclerosis

Abstract

Keywords

ASJC Scopus subject areas

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