“Understanding activity participation among individuals with Wolfram Syndrome”

2018 has brought another publication from the Wolfram Research Group! This article, titled “Understanding activity participation among individuals with Wolfram Syndrome”, was recently accepted to the British Journal of Occupational Therapy.

We wanted to learn more about the use of Occupational Therapy (OT) services in people with Wolfram Syndrome (WFS), and how participation in daily activities could be affected due to WFS symptoms. Participation in daily activities means being able to do the things we want and need to do, which leads to more independence and improved quality of life. Knowing the activities that are most important to those with WFS can help us develop better and more patient-focused interventions and services.

We asked research clinic participants questions about 1) their use of OT services in the past and present, 2) which daily activities were most difficult for them to accomplish, how important these activities are to them and how satisfied they were with their performance and ability to do the activity, and 3) which WFS symptoms affected these daily activities.

Overall, we found that only 22% of participants have ever used OT services. These services were most often for fine motor coordination and low vision. In addition, we found that daily activities identified as important were self-care (personal care, mobility), productive (household management, going to school or work), and leisure (recreation and social) activities.

Overall, we found that people reported reduced participation in daily activities when compared to a non- WFS group. In addition, participation was more restricted over time as WFS neurological symptoms progressed. Adults had more difficulty with activities that were related to social activities and getting out in the community and children/teenagers had more difficulty with activities related to playing and school. Participation in daily activities was most restricted due to walking/balance problems and loss of vision.

These findings raise awareness of the impact of WFS symptoms on daily life and point to neurologic and vision symptoms as being the most limiting aspects of WFS. OT professionals can provide self-management techniques and strategies for low vision or balance issues. These approaches may be of help to those not already using OT services.

 

For more information, look for this publication in the near future: Bumpus E, Hershey T, Doty T, Ranck S, Gronski M, Urano F, & Foster E. Understanding activity participation among individuals with Wolfram Syndrome. British Journal of Occupational Therapy. (In Press).