This chapter discusses the sensitivities when conducting research in persons living with rheumatoid arthritis (RA). Living with any disease is difficult and adapting to emotional and lifestyle changes contributes to further layers of the disease. Autoimmune diseases are no different; however, they may have hidden layers as a silent disease. The silent aspect of RA includes fatigue, daily pain, and the inability to participate in normal daily activities. Understanding of the disease process and treatment of RA has improved; however, areas of the disease process that are not understood include extra-articular comorbidities, which have diagnostic challenges. This chapter explores considerations for sensitive research regarding individuals with RA, including recruitment, site location, appointment flexibility, data collection methods, communication, plus sensitivities of both participants and researchers. The authors provide insights to their research which investigated the precursory changes of rheumatoid vasculitis (RV) using vascular ultrasound imaging and development of an automated imaging program. This research is the first to identify ultrasound artery differences between people with and without RA. This evidence, while in early days, could provide a voice for unheard and poorly understood symptoms, and address the frustrating experience of living with evolving symptoms of RA that are associated with the disease.

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Rheumatoid Arthritis Research: A Sensitive Approach

  • Robyn Boman,
  • Stefania Penkala,
  • Rosa H. M. Chan,
  • Fredrick Joshua,
  • Roy T. H. Cheung

摘要

This chapter discusses the sensitivities when conducting research in persons living with rheumatoid arthritis (RA). Living with any disease is difficult and adapting to emotional and lifestyle changes contributes to further layers of the disease. Autoimmune diseases are no different; however, they may have hidden layers as a silent disease. The silent aspect of RA includes fatigue, daily pain, and the inability to participate in normal daily activities. Understanding of the disease process and treatment of RA has improved; however, areas of the disease process that are not understood include extra-articular comorbidities, which have diagnostic challenges. This chapter explores considerations for sensitive research regarding individuals with RA, including recruitment, site location, appointment flexibility, data collection methods, communication, plus sensitivities of both participants and researchers. The authors provide insights to their research which investigated the precursory changes of rheumatoid vasculitis (RV) using vascular ultrasound imaging and development of an automated imaging program. This research is the first to identify ultrasound artery differences between people with and without RA. This evidence, while in early days, could provide a voice for unheard and poorly understood symptoms, and address the frustrating experience of living with evolving symptoms of RA that are associated with the disease.