Utilizing a culturally sensitive educational needs assessment tool (ENAT) allows patients with arthritis to prioritize the “most important educational/informational needs” from their perspective.7 Population-specific literature reviews, structured surveys, key informant interviews and focus groups deepen the practitioner’s understanding of the patient’s unique needs and preferences for education and support to help them manage their illness. This input is essential in developing patient education curriculum.
To maintain the relevance and vibrancy of a group, the patient perspective must always be in the forefront. What do participants say they want and need? What have they identified as being most important to them? The dual-pronged approach of providing essential evidence-based, disease-specific information, integrated with patient-driven curriculum, ensures that a group is patient focused and promotes ownership among program participants. Questionnaires, focus groups and structured interviews are tools of choice for eliciting feedback and measuring outcomes that are most important to patients, and for determining efficacy of interventions and how they can be improved to address the pressing needs of its participants.
When identifying the outcomes and priorities important to patients, consider group participants’ race, ethnicity, gender, sexual orientation, social and economic status, language and health literacy. The importance of doing this cannot be overstated.
Partner Wisdom
A clinician or department with limited experience may find the idea of developing a patient group daunting. At the 2016 and 2017 ACR/ARHP Annual Meetings, 30 healthcare professionals and patient advocates from the U.S., Canada, Latin America and Europe attended a study group focusing on the use of group work with patients with rheumatic illness. At the 2018 Annual Meeting in Chicago, we will continue the discussion.
Among the most pressing concerns raised by study group participants were securing institutional buy-in and funding; engaging multidisciplinary partners; developing group focus and content; and, not insignificantly, addressing novice facilitators’ feelings of inadequacy in a new role.
For some, these concerns may represent insurmountable obstacles. But one approach to consider is a pilot group. Over time, a grant-funded program that demonstrates positive outcomes may succeed in securing a line in its organization’s budget. Other potential barriers are limited resources and trained personnel. Taking an interdisciplinary approach, depending on expertise and interest, physicians, nurses, social workers, physical therapists, pharmacists and others can be recruited for input on curriculum, one-time lectures or deeper involvement.
Practices can also partner with or adapt other organizations’ programs, or access expertise through those whose missions align with yours. These may include hospitals, disease-specific education and advocacy organizations such as the Arthritis Foundation, Spondylitis Association of America, Lupus Foundation of America, Myositis Association and Scleroderma Foundation, as well as social service agencies and social work or psychology departments of universities.
