Multinational Qualitative Research Study Exploring the Patient Experience of Raynaud's Phenomenon in Systemic Sclerosis

Arthritis Care & Research
John D PaulingSarah Hewlett

Abstract

Raynaud's phenomenon (RP) is the most common manifestation of systemic sclerosis (SSc). RP is an episodic phenomenon, not easily assessed in the clinic, leading to reliance on self-report. A thorough understanding of the patient experience of SSc-RP is essential to ensuring that patient-reported outcome (PRO) instruments capture domains important to the target patient population. We report the findings of an international qualitative research study investigating the patient experience of SSc-RP. Focus groups of SSc patients were conducted across 3 scleroderma centers in the US and UK, using a topic guide and a priori purposive sampling framework devised by qualitative researchers, SSc patients, and SSc experts. Focus groups were audio recorded, transcribed, anonymized, and analyzed using inductive thematic analysis. Focus groups were conducted until thematic saturation was achieved. Forty SSc patients participated in 6 focus groups conducted in Bath (UK), New Orleans (Louisiana), and Pittsburgh (Pennsylvania). Seven major themes were identified that encapsulate the patient experience of SSc-RP: physical symptoms, emotional impact, triggers and exacerbating factors, constant vigilance and self-management, impact on daily life, u...Continue Reading

References

Jan 1, 1989·Scandinavian Journal of Rheumatology·P S KlimiukM I Jayson
Feb 1, 1985·Annals of the Rheumatic Diseases·V KyleB Hazleman
Jan 1, 1982·The British Journal of Dermatology·P M DowdJ D Kirby
Aug 1, 1981·Annals of the Rheumatic Diseases·M F MartinJ D Kirby
Oct 18, 1980·British Medical Journal·P C CliffordP A Dieppe
Mar 4, 2000·Annals of the Rheumatic Diseases·P V VoulgariA A Drosos
Oct 2, 2002·Arthritis and Rheumatism·Peter A MerkelUNKNOWN Scleroderma Clinical Trials Consortium
Sep 26, 2007·Annals of the Rheumatic Diseases·D KhannaUNKNOWN Scleroderma Clinical Trials Consortium co-authors
Dec 25, 2010·Joint, Bone, Spine : Revue Du Rhumatisme·Vasileios Botzoris, Alexandros A Drosos
Mar 4, 2014·The Journal of Rheumatology·John R KirwanLaure Gossec
Feb 2, 2019·Journal of Scleroderma and Related Disorders·John D PaulingAriane L Herrick

❮ Previous
Next ❯

Citations

Mar 3, 2019·The Journal of Rheumatology·John D PaulingTracy M Frech
Aug 20, 2019·Clinical Rheumatology·John D PaulingJanet E Pope
Feb 27, 2020·Nature Reviews. Rheumatology·Michael HughesMarco Matucci-Cerinic
Aug 20, 2019·Arthritis Care & Research·Laura RossMandana Nikpour
Jul 17, 2019·The Journal of Rheumatology·John D Pauling, Tracy M Frech
Jun 3, 2020·Journal of Medical Internet Research·Kathleen YinAnnie Y S Lau
Mar 25, 2019·Journal of Scleroderma and Related Disorders·Murray BaronAlessandra Vacca
Jan 25, 2021·Clinical Rheumatology·Susan L MurphyDinesh Khanna
Nov 18, 2020·Clinical Medicine : Journal of the Royal College of Physicians of London·Ashraful Haque, Michael Hughes
Aug 23, 2021·Current Opinion in Rheumatology·Ariane L Herrick

❮ Previous
Next ❯

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.