Utilization Of An Informational Needs Assessment To Develop An Education Program For Patients With Ankylosing Spondylitis (AS) and Related Axial Spondyloarthritis (SpA)

Rita Kang¹, Rebecca Morton², Christopher Hawke³, Laura A. Passalent⁴, Robert D. Inman^5,6, Dinny Wallis⁷, Joan Blair³, Alison Lake⁸, Heather Sloman⁸, Marc Doucet⁹, Debra MacGarvie⁸ and King Wong⁹, ¹Patient Education, University Health Network- Toronto Western Hospital, Toronto, ON, Canada, ²Allied Health/Rheumatology, University Health Network- Toronto Western Hospital, Toronto, ON, Canada, ³Toronto Western Hospital, University of Toronto, Toronto, ON, Canada, ⁴Allied Health, Toronto Western Hospital, University of Toronto, Toronto, ON, Canada, ⁵Dept of Medicine/Rheumatology, Toronto Western Research Institute, University Health Network and University of Toronto, Toronto, ON, Canada, ⁶U of Toronto, Toronto, ON, Canada, ⁷Rheumatology, Toronto Western Hospital, University of Toronto, Toronto, ON, Canada, ⁸University Health Network- Toronto Western Hospital, Toronto, ON, Canada, ⁹University Health Network, Toronto, ON, Canada

Meeting: 2013 ACR/ARHP Annual Meeting

Keywords: Ankylosing spondylitis (AS), Assessment, educational research, management and patient outcomes

Session Information

Title: ARHP Education/Community Programs

Session Type: Abstract Submissions (ARHP)

Background/Purpose:

The effectiveness of education programs for patients with arthritis has been well documented. Despite this, there has been minimal investigation into patient education specifically for ankylosing spondylitis (AS) and axial spondyloarthritis (SpA). The current evidence suggests that only 40% of patients with AS are being referred for education. 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 term. Effective patient education programs are built on carefully executed needs assessments.

The objective of this study was 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, i.e. group classes vs. pamphlet etc. 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, Ontario, 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 and an open ended question at the end of the survey. 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 sample group was primarily older adults, with 22.3% between the ages of 31 to 40, 23.2% between the ages of 41 to 60. The sample group was well educated, with 50.0% completing college or university and 24.1% completing graduate school. The average number of years since diagnosis was 11 years. Of those who completed the survey, 21 (19.4%) were newly diagnosed (diagnosed between 2010-2012) and 87 (80.6%) were diagnosed earlier than 2010. The Disease, Diagnosis and Prognosis and Management sections were found to be the most important informational needs. In addition: website, on-line audio/ video and E-learning were cited as the most useful ways to receive information in all five sections. Qualitative analysis indicated three major themes concerning patients including medication/pain, fatigue/activity/work and long term prognosis.

Conclusion: 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.

Disclosure:

R. Kang,
None;

R. Morton,
None;

C. Hawke,
None;

L. A. Passalent,
None;

R. D. Inman,
None;

D. Wallis,
None;

J. Blair,
None;

A. Lake,
None;

H. Sloman,
None;

M. Doucet,
None;

D. MacGarvie,
None;

K. Wong,
None.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/utilization-of-an-informational-needs-assessment-to-develop-an-education-program-for-patients-with-ankylosing-spondylitis-as-and-related-axial-spondyloarthritis-spa/