Fatigue as an Understudied Barrier to Participation in Life Roles

Abstract

Fatigue is one of the most burdensome and disabling symptoms in numerous acute and chronic conditions and is associated with reduced participation in all aspects of daily life, for example, parenting, employment, and socialization. Historically, occupational practitioners played key roles in fatigue management by creating and implementing interventions. The American Occupational Therapy Foundation convened a Planning Grant Collective workshop with the goal to develop collaborative research ideas and proposals to advance the understanding and management of fatigue. Participants from occupational therapy and other disciplines, with expertise with fatigue or who were conducting research on fatigue, participated in a 3-day virtual workshop. Four main topics emerged: implementation science, treatment taxonomy, trial design and comparative effectiveness, and phenotyping. This white paper describes the proceedings, summarizes the discussions, and outlines recommendations from the PGC workshop on fatigue.

Increased Confidence and Deeper Understanding of Fatigue Following Participation in Fatigue Education and Management Education in Systemic Sclerosis: A Mixed Methods Evaluation of a Virtual Intervention

“…In today's health care and reimbursement systems in the United States, barriers for implementation of self‐management–type programs include reimbursement and lack of support from administrators and payers for group therapy, telehealth, and time for therapists to be trained and to deliver FAME‐iSS. 44 Although virtual programs are not supported in the clinic situation, offering the program virtually through community and voluntary organizations could be feasible and particularly important for people with a rare disease such as SSc. Some evidence exists to use peer leaders or peer‐mentored leaders to deliver self‐management programs in the community, which could also be explored for future implementation of FAME‐iSS.…”