Background/Purpose: Getting trustworthy information to patients with arthritis is a challenge facing health professionals and organizations concerned with arthritis. This study examined the perceptions of individuals with arthritis and family members of those with arthritis to learn about where they most frequently sought and received information about arthritis and their perceptions of the trustworthiness of arthritis information.
Methods: The Arthritis Society in Canada contracted a survey research organization to conduct parallel national surveys in June 2012 of adults living with arthritis and adults caring for individuals with arthritis. Respondents completed on-line or telephone interviews asking about their (or their relative’s) arthritis; where and when they sought information about arthritis; their attitudes toward different sources of information; and any actions taken to manage arthritis.
Results: 1300 patients were surveyed (inflammatory arthritis (IA) = 399; osteoarthritis (OA) = 560, other arthritis = 341). Overall results did not differ by type of arthritis. The mean severity of arthritis (1-10 scale) was 5.4 and the major reported impact was being no longer able to do many of the things they used to enjoy (76%). The majority of participants had been given their arthritis diagnosis by a general practitioner and only a minority by a rheumatologist (17% of those with IA). Information provided at the time of diagnosis concerned mainly medical management: 17% reported getting no arthritis information. The most cited reason for looking for information was wanting to know more to help better manage arthritis symptoms. Topics included managing pain other than with medication (32%), medications for arthritis symptoms (30%), exercising safely (23%), and diet for good health (22%). Top changes made as a result of information were starting to exercise (22%), changes to diet (22%), and adjustments to lifestyle to deal with pain (21%). The two top sources of information were health care professionals and the internet. Only a minority of participants (30%) used The Arthritis Society online or print media. Health care professionals were viewed as a trustworthy source, but not easy to access, with the opposite view about the internet. The Arthritis Society online was viewed as trustworthy, easy to access and as providing current information. Only 13% of patients had attended a self-management or education programs. When asked about reasons for not attending, 30% expressed no interest and 27% did not answer. Overall, the findings from the 319 caregivers surveyed were similar to those of patients.
Conclusion: The findings reveal opportunities for arthritis organizations to help meet arthritis information needs. Major reasons for looking for information were related to how to live better with arthritis and a substantial proportion of individuals reported taking action as a result. Trustworthy information was not found to be easy to access. Providing this online is an opportunity for arthritis organizations. Many people sought advice from health professionals, especially family doctors who would also benefit from information to help patients better manage arthritis in their daily lives.
Disclosure:
E. M. Badley,
None;
M. A. Gignac,
None;
L. Moore,
None;
C. H. Chan,
None;
X. Cao,
None;
J. Bowring,
None.
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/an-education-needs-assessment-findings-from-surveys-of-patients-and-caregivers/