Defining independence: A scoping review by the OMERACT patient perspective of remission in rheumatoid arthritis group |
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| Affiliation: | 1. Rheumatology Unit, Flinders Medical Centre, South Australia, Australia;2. Faculty of Health and Applied Sciences, University of the West of England, United Kingdom;3. Rheumatology Unit, Royal Adelaide Hospital, South Australia, Australia;4. Department of Pharmacy and Department of Research & Innovation, Sint Maartenskliniek and Department of Pharmacy, Radboud University Medical Centre, Nijmegen, The Netherlands;5. OMERACT Patient Research Partner, the Netherlands;6. Sydney Medical School, Institute of Bone and Joint Research, and Department of Rheumatology, Royal North Shore Hospital, St Leonards, Australia;7. Insititute of Work and Health, Institute for Health Policy Management and Evaluation, University of Toronto, Toronto, Ontario, Canada;8. Department of Medicine, Division of Rheumatology, University of Ottawa, Ottawa, Canada;9. School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada;10. Discipline of Medicine, University of Adelaide, South Australia, Australia;1. Department of Anaesthesiology, Chung Shan Medical University Hospital, Taichung, Taiwan;2. Department of Allergy, Immunology & Rheumatology, Chung Shan Medical University Hospital, Taichung, Taiwan;3. Institute of Medicine, Chung Shan Medical University, Taichung, Taiwan;4. Graduate Institute of Integrated Medicine, China Medical University, Taichung, Taiwan;1. Department of Physiology, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece;2. Joint Academic Rheumatology Program, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece;1. Department of Rheumatology, Aarhus University Hospital, Palle Juul-Jensens Boulevard 99, Aarhus 8200, Denmark;2. Department of Clinical Medicine, Aarhus University, Palle Juul-Jensens Boulevard 82, Aarhus 8200, Denmark;3. Diagnostic Centre, Silkeborg Regional Hospital, Falkevej 1, Silkeborg 8600, Denmark;4. Department of Nuclear Medicine and PET, Aarhus University Hospital, Palle Juul-Jensens Boulevard 99, Aarhus 8200, Denmark;1. Rheumatology Department Reina Sofia University Hospital, Córdoba, Spain;2. Maimonides Biomedical Research Institute of Cordoba (IMIBIC), Cordoba, Spain;3. University of Córdoba, Córdoba, Spain;4. Université de Paris cite Department of Rheumatology - Hôpital Cochin. Assistance Publique - Hôpitaux de Paris INSERM (U1153): Clinical epidemiology and biostatistics, PRES Sorbonne Paris-Cité. Paris, France;1. Hospital Universitario Marqués de Valdecilla, IDIVAL, Santander, Spain;2. Hospital Universitario de Canarias, Santa Cruz de Tenerife, Spain;3. Hospital del Mar, Barcelona, Spain;4. Hospital Clinic, Barcelona, Spain;5. Hospital General Universitario de Valencia, Valencia, Spain;6. Hospital Peset, Valencia, Spain;7. Hospital de León, León, Spain;8. Hospital Universitario La Fe, Valencia, Spain;9. Hospital Universitario IOBA, Valladolid, Spain;10. Hospital Universitario de Donosti, San Sebastián, Spain;11. Hospital Universitario de Basurto, Bilbao, Spain;12. Hospital General Santa María del Puerto, Cádiz, Spain;13. Hospital Clínico San Carlos, Madrid, Spain;14. Complejo Hospitalario Universitario de A Coruña, A Coruña, Spain;15. Hospital Doctor Negrín, Las Palmas de Gran Canaria, Spain;p. Hospital Universitario Santiago de Compostela, A Coruña, Spain;q. Hospital Universitario 12 de Octubre, Madrid, Spain;r. Hospital Universitario Fundación de Alcorcón, Madrid, Spain;s. Research Unit, Hospital Universitario de Canarias, Tenerife, Spain;t. Hospital Universitario Miguel Servet, Zaragoza, Spain;u. Hospital Puerta del Mar, Cádiz, Spain;v. Hospital Universitario de Bellvitge, Barcelona, Spain;w. Hospital Universitario de La Princesa, Madrid; cátedra UAM-Roche, EPID-Future, Department of Medicine, Universidad Autónoma de Madrid, Madrid, Spain;1. Department of Rheumatology, Monash Health, 246 Clayton Road, Clayton, VIC 3168, Australia;2. School of Clinical Sciences, Monash University, 246 Clayton Road, Clayton, VIC 3168, Australia;3. Department of Rheumatology, Royal United Hospital, Bath, United Kingdom;4. Department of Pharmacology, University of Bath, Bath, United Kingdom |
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| Abstract: | 
AimsThe Outcome Measures in Rheumatology Trials (OMERACT) Remission in Rheumatoid Arthritis (RA) patient perspective working group has previously found that patients prioritised independence, pain, and fatigue as key domains of remission in RA. However, there is currently no clear definition of independence. Consequently, this scoping review aimed to explore how independence is represented in the RA literature.MethodsA comprehensive search of the EMBASE, Medline, and PsycInfo databases was performed for publications that used independence or autonomy as a disease activity measure, description of disease in remission or treatment outcome. Papers were included if they involved adult participants and were written in English, with no restrictions on study design or publication year. Two reviewers (TK and AC, AT or BJ) independently screened the abstracts. A thematic approach was applied to derive common definitions and descriptions of independence.Results660 articles were identified, of which 58 (25 qualitative, 28 quantitative, one mixed, and four reviews) met the inclusion criteria. 86% of total participants were female. Ten publications referenced remission. Independence took many forms; in addition to physical and functional capability, it was described in relation to work, social activities, autonomy in healthcare, and household activities. Four common themes describing independence were identified:1. A return to a state before arthritis.2. Being physically and functionally able.3. A sense of freedom without needing to rely on others.4. Having control over the organisation of one's life.ConclusionAlthough independence is frequently mentioned in the RA literature, it has various meanings, lacks a consistent definition, and is a concept rarely applied to remission. It is multi-factorial, exceeding functional ability alone, and contextualised within sociodemographic and disease factors. This scoping review provides common descriptions of independence to inform future qualitative work towards the development of an outcome measure of independence for the assessment of RA in remission. |
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