Background The effectiveness of education programs for patients with arthritis has been well documented1. Despite this, there has been minimal investigation into patient education specifically for ankylosing spondylitis (AS) and axial spondyloarthritis (SpA). AS patient education programs have demonstrated positive effects with respect to mobility, function, self efficacy, and depression, however many of these effects are not sustained over the long term2,3. Effective patient education programs are built on carefully executed needs assessments4.
Objectives To identify what patients with AS and SpA feel their current informational needs are. In addition, the method of preferred information access was also assessed. This information will be used to develop a comprehensive interprofessional patient education program for patients with AS and SpA attending the Toronto Western Hospital Spondylitis Clinic, Toronto, Canada.
Methods Patients with AS and SpA were emailed a link with an Informational Needs Assessment Survey. This included five multiple choice sections: 1. Demographics, 2. Disease, Diagnosis and Prognosis, 3. Management, 4. Relationships, 5. Emotions. Descriptive statistics and bivariate analyses were used for data analysis. Qualitative statistical methods were utilized to address the open ended question section.
Results The response rate was 32.1%, of which 66.1% were male. The average number of years since diagnosis was 11 years. The Disease, Diagnosis and Prognosis and Management sections were found to be the most important informational needs. Websites, on-line audio/ video and E-learning were cited as the most useful ways to receive information in all sections. Qualitative analysis indicated three major themes concerning patients: medication/pain, fatigue/activity/work and long term prognosis.
Conclusions Based on the needs assessment, it was determined to develop an e-learning module for this patient population followed by self-management focused face-to-face sessions. It is anticipated this unique education program for patients with AS and SpA will be a successful model using best practice in patient education.
Riemsma RP, Kirwan JR, Taal E, Rasker JJ. Patient education for adults with rheumatoid arthritis. Cochrane Database Syst Rev 2003; 2: CD003688.
Kraag G, Stokes B, Groh J et al. The effects of comprehensive home physiotherapy and supervision on patients with ankylosing spondylitis ± a randomized controlled trial. Journal of Rheumatology 1990; 17: 228-33
Barlow JH & Barefoot J. Group education for people with arthritis. Patient Education and Counseling 1996; 27: 257-67.
Lorig K. Patient education: a practical approach. Sage Publications Inc: California. 2001.
Acknowledgements Funding for this research was made possible by a Canadian Initiative for Outcomes in Rheumatology Care (CIORA) grant received in 2012.
Disclosure of Interest None Declared