Arthritis & Rheumatism, Volume 62,
November 2010 Abstract Supplement
Abstracts of the American College of
Rheumatology/Association of Rheumatology Health Professionals
Annual Scientific Meeting
Atlanta, Georgia November 6-11, 2010.
Mapping Pathways through Care: Accounts of Help-Seeking in Early Rheumatoid Arthritis (RA).
Townsend2, Anne, Backman3, Catherine L., Adam1, Paul, Cox4, Susan M., Li3, Linda C., Erahse Team,
Mary Pack Arthritis Centre
Maurice Young Centre for Applied Ethics, University of British Columbia, Vancouver, BC, Canada
University of British Columbia, Vancouver, BC, Canada
University of British Columbia
Timely treatment can control RA, alter the disease course, and limit its impact on daily life. Prompt intervention with DMARDS is linked to improved outcome, yet there is an avoidable time lag between individuals experiencing the onset of RA and receiving DMARDS1. This delay is influenced by a range of individual and system based factors: accessing the GP consultation; the time between the initial family physician (FP) visit and gaining a rheumatologist referral; and the wait between referral time and the rheumatologist visit1. However, little is known about the relative significance of factors associated with delays along the continuum of care. The current study aims to understand the process of help-seeking for early symptoms of RA from the patient perspective.
38 people (37 women, 1 man), who were diagnosed with RA within the past 12 months, were recruited from offices of rheumatologists and family physicians (FP) and from newsletters of patient advocacy groups. In-depth face-to-face interviews were organized around three overlapping topics: 1) onset of symptoms and initial illness actions; 2) seeking help from health professionals leading to diagnosis; and 3) post-diagnosis experiences. Follow-up phone calls were made to check and elaborate on the interview generated data. Analysis was informed by grounded theory and a narrative approach.
Four stages of delay were identified: 1) onset of symptoms to the FP visit; 2) gaining a referral; 3) waiting for the specialist meeting; 4) gaining the diagnosis and treatment plan. Participant accounts featured delays characterized by a complex array of interlocking bio-psychosocial factors in the personal and broader health care setting. E.g. the nature of symptoms, the impact of symptoms on function, and the ability to fulfill social obligations and maintain daily life and identities; the ability to mobilize effective self-management strategies; patient-professional interactions, access to medical care and knowledge about arthritis and treatment options coalesced to impact the course of help-seeking. A key theme was the impact of personal philosophy and attitude (e.g. stoicism) and self-management practices (e.g. adapting to symptoms, use of over-the-counter medications, and use of the Internet to gain symptom related knowledge) on accessing medical help and specialist referrals.
Our findings concur with the literature on the points of delay in RA care1 and are in line with research on chronic illness, which reveals a direct link between self-management and formal help-seeking 2. Patients typically entered the health-care system as self-managers and continued to self-manage as illness developed. Given the central role of self-management of chronic illness in research, policy and practice, together with the importance of early diagnosis and treatment in RA, further research is required to address the nature and role of self-management along the continuum of care.
To cite this abstract, please use the following information:
Townsend, Anne, Backman, Catherine L., Adam, Paul, Cox, Susan M., Li, Linda C., Erahse Team, ; Mapping Pathways through Care: Accounts of Help-Seeking in Early Rheumatoid Arthritis (RA). [abstract]. Arthritis Rheum 2010;62 Suppl 10 :2282