Research finds early RA symptoms often dismissed by patients

Have you ever wondered why there are so many challenges to getting diagnosed and starting treatment early for people with arthritis?

Researchers from the University of British Columbia and the Arthritis Research Centre of Canada, led by Drs. Linda Li, Anne Townsend, Catherine Backman and Mr. Paul Adam, asked this and many other questions in an effort to understand the process of seeking help and managing symptoms during the early stages of rheumatoid arthritis (RA). They interviewed 38 people who had received a diagnosis within the past year to try to understand why people may not consult their family doctor for early RA symptoms, and to identify the barriers to getting a diagnosis and starting a course of treatment.

Results of this study showed that the early symptoms of RA are often thought of as being ‘just aches and pains’ of daily life, and not reason enough to make an appointment to see their family doctor; in these instances the doctor appointment was made only when the symptoms had worsened. Some managed their RA symptoms with the use of over-the-counter medications and only sought help from their doctor when the symptoms prevented them from going about their daily life, such as paid employment or household activities. In some cases people told how the family doctor did not recognize the symptoms as needing a specialist referral, while at other times referral was prompt, but the waiting time to get an appointment and see the specialist ended up delaying the diagnosis. Many people were unsure about taking medications. Although wanting relief, some people feared the potential side effects of medications, while others stated that they were not ‘pill takers’. What often swayed people to take medications was hearing about how medications could potentially bring the disease into remission, if started early enough, or having symptoms that interfered significantly with daily life.

Researchers also identified several important themes about the supports people have and the challenges they face when making treatment decisions or negotiating the healthcare system. Many people described encounters with rheumatologists who answered their questions, provided a thorough examination, heard their concerns, and in whom they felt complete trust. Other people felt that the information provided by the rheumatologist about the risks and benefits of various treatment options was incomplete, which made it difficult for them to make informed choices. Some felt that their concerns were not being heard by their rheumatologist or expressed frustration with not knowing which health resources to access or how to access them. These frustrations resulted in dissatisfaction that in some cases motivated people to switch physicians.

What can we do with this information? An immediate next-step is to find out if, and to what degree, these challenges affect early diagnosis and treatments in early RA in Canada. To this end, researchers are developing a nation-wide survey that will be sent to about 190 patients with newly diagnosed RA. This survey will provide important background information for creating targeted strategies to improve early diagnosis and care.

This study has also generated another exciting research initiative. Recently, the research team has received a 2-year grant from the Canadian Institutes of Health Research to develop a web-based animated decision aid to help patients make informed treatment decisions jointly with their doctors. This tool will be developed in partnership with the Centre for Digital Media in Vancouver. The project begins in June 2009 and a link to the study webpage will be available on the CAPA website. For more information about these studies, contact Zubin Amarsi, Research Coordinator at zamarsi@arthritisresearch.ca or 604-871-4572.