Lilian H D van Tuyl1, Martina Sadlonova2, Sarah Hewlett3, Bev Davis4, Caroline Flurey3, Niti Goel5, Laure Gossec6, Cecilie Heegaard Brahe7, Catherine L Hill8, Wijnanda Hoogland9, John Kirwan10, Merete L Hetland7, Dirkjan van Schaardenburg1, Josef S Smolen2, Tanja Stamm2, Marieke Voshaar9, George A Wells11, Maarten Boers1,12. 1. Amsterdam Rheumatology & Immunology Center, Amsterdam, The Netherlands. 2. Medical University of Vienna, Vienna, Austria. 3. University of the West of England, Bristol, UK. 4. Patient Partner, Bristol, UK. 5. Quintiles and Duke University School of Medicine, Durham, North Carolina, USA. 6. Department of Rheumatology, Sorbonne Universités, UPMC Univ Paris 06; AP-HP, Pitié Salpêtrière Hospital, Paris, France. 7. Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Rigshospitalet, Glostrup, Denmark. 8. University of Adelaide, Adelaide, South Australia, Australia. 9. Patient Partner, Amsterdam, The Netherlands. 10. University of Bristol, Bristol, UK. 11. University of Ottawa, Ottawa, Canada. 12. Department of Epidemiology & Biostatistics, VUmc, Amsterdam, The Netherlands.
Abstract
BACKGROUND: Guidelines suggest treatment in rheumatoid arthritis (RA) to target remission, in close consultation with the patient. Our recent qualitative study of the patients' perspective on remission in RA identified 26 domains. The current study aimed to identify a short list of the most important aspects to inform future research. METHODS: Patients with RA from the Netherlands, the UK, Austria, Denmark, France and the USA completed a survey that contained all domains identified in our qualitative study. They rated domains for importance ('not important', 'important' or 'essential' to characterise a period of remission) and if important or essential, whether this domain needs to be 'less', 'almost gone' or 'gone' to reflect remission. Respondents were also asked to determine their personal top 3 most important/essential domains. Frequency of specific domains in the top 3 was calculated, and domains were sorted on the percentage of patients that evaluated a particular domain as 'essential'. RESULTS: Of 274 respondents, 75% were female, mean (SD) age 57(13) years, disease duration 12(9) years. The top 3 were as follows: pain (67%), fatigue (33%) and independence (19%); domains most frequently rated as 'essential' were as follows: pain (60%), being mobile (52%), physical function (51%), being independent (47%) and fatigue (41%). Pain needed to be less (13%), almost gone (42%) or gone (45%) to reflect remission. Similar patterns were seen for fatigue, independence, mobility and physical functioning. CONCLUSION: Patients identified pain, fatigue and independence as the most important domains of RA disease activity that need to be improved to reflect remission. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
BACKGROUND: Guidelines suggest treatment in rheumatoid arthritis (RA) to target remission, in close consultation with the patient. Our recent qualitative study of the patients' perspective on remission in RA identified 26 domains. The current study aimed to identify a short list of the most important aspects to inform future research. METHODS:Patients with RA from the Netherlands, the UK, Austria, Denmark, France and the USA completed a survey that contained all domains identified in our qualitative study. They rated domains for importance ('not important', 'important' or 'essential' to characterise a period of remission) and if important or essential, whether this domain needs to be 'less', 'almost gone' or 'gone' to reflect remission. Respondents were also asked to determine their personal top 3 most important/essential domains. Frequency of specific domains in the top 3 was calculated, and domains were sorted on the percentage of patients that evaluated a particular domain as 'essential'. RESULTS: Of 274 respondents, 75% were female, mean (SD) age 57(13) years, disease duration 12(9) years. The top 3 were as follows: pain (67%), fatigue (33%) and independence (19%); domains most frequently rated as 'essential' were as follows: pain (60%), being mobile (52%), physical function (51%), being independent (47%) and fatigue (41%). Pain needed to be less (13%), almost gone (42%) or gone (45%) to reflect remission. Similar patterns were seen for fatigue, independence, mobility and physical functioning. CONCLUSION:Patients identified pain, fatigue and independence as the most important domains of RA disease activity that need to be improved to reflect remission. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Authors: Suz Jack Chan; Lisa K Stamp; Nicola Liebergreen; Henry Ndukwe; Carlo Marra; Gareth J Treharne Journal: Patient Date: 2020-04 Impact factor: 3.883
Authors: Ellen Landgren; Ann Bremander; Elisabet Lindqvist; Maria Nylander; Kristien Van der Elst; Ingrid Larsson Journal: Patient Prefer Adherence Date: 2020-08-13 Impact factor: 2.711
Authors: Ethan T Craig; Jamie Perin; Scott Zeger; Jeffrey R Curtis; Vivian P Bykerk; Clifton O Bingham; Susan J Bartlett Journal: Arthritis Care Res (Hoboken) Date: 2020-11 Impact factor: 4.794
Authors: Bruno Fautrel; Rieke Alten; Bruce Kirkham; Inmaculada de la Torre; Frederick Durand; Jane Barry; Thorsten Holzkaemper; Walid Fakhouri; Peter C Taylor Journal: Rheumatol Int Date: 2018-03-21 Impact factor: 2.631
Authors: Allan Gibofsky; James Galloway; Joern Kekow; Cristiano Zerbini; Maria de la Vega; Gavin Lee; Eun Young Lee; Catalin Codreanu; Cheryl Koehn; Kathy Steinberg; Eustratios Bananis; Dario Ponce de Leon; Anna Maniccia; Ara Dikranian Journal: Health Qual Life Outcomes Date: 2018-11-09 Impact factor: 3.186