OBJECTIVES: Knowledge about the nature and impact of symptoms faced by patients with systemic sclerosis (SSc) is needed to identify targets for research and treatment. The aim of this study was to assess and compare the frequency and impact on everyday activities of SSc symptoms among patients from five European countries. METHODS: European patients with SSc were invited through announcements by patient associations to complete an online survey. The survey included items assessing the frequency of 40 SSc symptoms and the impact on daily activities, if present. Chi-square tests were utilised to assess the differences in frequency and impact of symptoms across countries. RESULTS: In total, 537 patients were included from France (n=111), the Netherlands (n=229), Spain (n=61), Switzerland (n=50), and the United Kingdom (n=86). Symptoms experienced by ≥ 70% of patients in all countries were fatigue, Raynaud's phenomenon, joint pain, and muscle pain. Twenty symptoms were experienced by ≥ 50% of patients in all countries. Thirty symptoms had an impact on daily activities in ≥ 50% of patients who reported that the symptom was present in all countries. There were significant differences among countries in the prevalence of 17 out of 40 symptoms. Furthermore, in 24 out of 40 symptoms significant differences in the proportion of patients reporting impact of a specific symptom on everyday activities were observed. CONCLUSIONS: European patients with SSc experience a broad range of symptoms that have an impact on everyday activities. International research initiatives should target common SSc symptoms cooperatively. Further research is needed to better understand the differences in SSc symptoms among countries.
OBJECTIVES: Knowledge about the nature and impact of symptoms faced by patients with systemic sclerosis (SSc) is needed to identify targets for research and treatment. The aim of this study was to assess and compare the frequency and impact on everyday activities of SSc symptoms among patients from five European countries. METHODS: European patients with SSc were invited through announcements by patient associations to complete an online survey. The survey included items assessing the frequency of 40 SSc symptoms and the impact on daily activities, if present. Chi-square tests were utilised to assess the differences in frequency and impact of symptoms across countries. RESULTS: In total, 537 patients were included from France (n=111), the Netherlands (n=229), Spain (n=61), Switzerland (n=50), and the United Kingdom (n=86). Symptoms experienced by ≥ 70% of patients in all countries were fatigue, Raynaud's phenomenon, joint pain, and muscle pain. Twenty symptoms were experienced by ≥ 50% of patients in all countries. Thirty symptoms had an impact on daily activities in ≥ 50% of patients who reported that the symptom was present in all countries. There were significant differences among countries in the prevalence of 17 out of 40 symptoms. Furthermore, in 24 out of 40 symptoms significant differences in the proportion of patients reporting impact of a specific symptom on everyday activities were observed. CONCLUSIONS: European patients with SSc experience a broad range of symptoms that have an impact on everyday activities. International research initiatives should target common SSc symptoms cooperatively. Further research is needed to better understand the differences in SSc symptoms among countries.
Authors: John D Pauling; Robyn T Domsic; Lesley A Saketkoo; Celia Almeida; Jane Withey; Hilary Jay; Tracy M Frech; Francesca Ingegnoli; Emma Dures; Joanna Robson; Neil J McHugh; Ariane L Herrick; Marco Matucci-Cerinic; Dinesh Khanna; Sarah Hewlett Journal: Arthritis Care Res (Hoboken) Date: 2018-08-16 Impact factor: 4.794
Authors: Lesley Ann Saketkoo; Tracy Frech; Cecília Varjú; Robyn Domsic; Jessica Farrell; Jessica K Gordon; Carina Mihai; Nora Sandorfi; Lee Shapiro; Janet Poole; Elizabeth R Volkmann; Monika Lammi; Kendra McAnally; Helene Alexanderson; Henrik Pettersson; Faye Hant; Masataka Kuwana; Ami A Shah; Vanessa Smith; Vivien Hsu; Otylia Kowal-Bielecka; Shervin Assassi; Maurizio Cutolo; Cristiane Kayser; Victoria K Shanmugam; Madelon C Vonk; Kim Fligelstone; Nancy Baldwin; Kerri Connolly; Anneliese Ronnow; Beata Toth; Maureen Suave; Sue Farrington; Elana J Bernstein; Leslie J Crofford; László Czirják; Kelly Jensen; Monique Hinchclif; Marie Hudson; Matthew R Lammi; Jennifer Mansour; Nadia D Morgan; Fabian Mendoza; Mandana Nikpour; John Pauling; Gabriela Riemekasten; Anne-Marie Russell; Mary Beth Scholand; Elise Seigart; Tatiana Sofia Rodriguez-Reyna; Laura Hummers; Ulrich Walker; Virginia Steen Journal: Best Pract Res Clin Rheumatol Date: 2021-09-15 Impact factor: 4.991
Authors: Henrik Pettersson; Helene Alexanderson; Janet L Poole; Janos Varga; Malin Regardt; Anne-Marie Russell; Yasser Salam; Kelly Jensen; Jennifer Mansour; Tracy Frech; Carol Feghali-Bostwick; Cecília Varjú; Nancy Baldwin; Matty Heenan; Kim Fligelstone; Monica Holmner; Matthew R Lammi; Mary Beth Scholand; Lee Shapiro; Elizabeth R Volkmann; Lesley Ann Saketkoo Journal: Best Pract Res Clin Rheumatol Date: 2021-07-01 Impact factor: 4.991
Authors: Jessica Meijs; Anne A Schouffoer; Nina Ajmone Marsan; Lucia J M Kroft; Theo Stijnen; Maarten K Ninaber; Tom W J Huizinga; Theodora P M Vliet Vlieland; Jeska K de Vries-Bouwstra Journal: RMD Open Date: 2016-03-15
Authors: Jack D Wilkinson; Sarah A Leggett; Elizabeth J Marjanovic; Tonia L Moore; John Allen; Marina E Anderson; Jason Britton; Maya H Buch; Francesco Del Galdo; Christopher P Denton; Graham Dinsdale; Bridgett Griffiths; Frances Hall; Kevin Howell; Audrey MacDonald; Neil J McHugh; Joanne B Manning; John D Pauling; Christopher Roberts; Jacqueline A Shipley; Ariane L Herrick; Andrea K Murray Journal: Arthritis Rheumatol Date: 2018-04-23 Impact factor: 10.995