Fatigue and activity management education for individuals with systemic sclerosis: Adaptation and feasibility study of an intervention for a rare disease

Abstract

Purpose Fatigue is an overlooked symptom for musculoskeletal diseases, including rare conditions like systemic sclerosis (SSc). The purpose of this study were the following: (1) to adapt the content and delivery method of an existing fatigue intervention, and (2) to determine the feasibility of Fatigue and Activity Management Education in Systemic Sclerosis (FAME‐iSS). Methods In Phase 1 adaptations were recorded using the Framework for Modification and Adaptations. In Phase 2, participants completed the 6‐week FAME‐iSS intervention and baseline, post‐intervention, and 3‐month follow‐up assessments measuring fatigue levels, fatigue impact, mental health, self‐efficacy, and use of energy conservation strategies. Qualitative data included a post‐intervention focus group and 3‐month follow‐up interviews. Results Three main changes were made to the original intervention: (1) the content was adapted from management of Lupus‐related fatigue to management of SSc‐related fatigue, (2) context for delivery from Ireland to United States, and (3) in‐person to online format. Participants (n = 4) were 51.8 ± 12.1 years old, had been diagnosed with SSc for 12.0 ± 8.0 years, were receiving disability support, and had college degrees. All participants had 100% attendance and completed all study activities. Participants had positive comments about the programme format, content, and implementation. Post‐intervention, improvements were observed in most measures. Moderate effect sizes were noted in fatigue and self‐efficacy scores. Conclusion Participants' positive responses supported the need for FAME‐iSS for people with SSc. Even with the small sample, FAME‐iSS led to improvements in fatigue and use of energy conservation strategies. The online format allowed for participation and sharing of ideas, especially during the global pandemic.

Perceived Cognitive Function in People With Systemic Sclerosis: Associations With Symptoms and Daily Life Functioning

“…Similar to previous SSc studies (7,8), the current study found that fatigue and pain severity was associated with decreased social participation and physical function. Although intervention programs currently help to manage and reduce fatigue (17,18), fatigue's impact on cognitive function and reduced daily life activities remains problematic in people with SSc. Participants with higher levels of pain reported lower levels of social participation and physical function, consistent with previous SSc research (7,23).…”

“…Although therapy and medical treatments can alleviate some clinical disease manifestations, patients with SSc face challenges in self-managing symptoms (14,15). No cure exists for SSc, but self-management programs can minimize the impact of the disease and optimize physical and psychological health (16)(17)(18)(19)(20). Despite these efforts, evidence suggests that cognitive impairment is a significant although understudied part of symptom experience in patients with SSc (21)(22)(23).…”

Testing the feasibility and acceptability of an online ‘Fatigue and Activity Management Education for Work (FAME‐W) programme’ for individuals with inflammatory arthritis

“…Moving from an in-person mode of delivery to an online platform was reported as beneficial especially for those working full time or living in rural and remote communities (Butzner & Cuffee, 2021;Carandang et al, 2022;Depuccio et al, 2022). Additionally, telehealth was recommended as a mode of delivery for patient education for IA care (De Thurah et al, 2022;Zangi et al, 2015).…”

“…However, many interventions do not address fatigue specifically and therefore may not include work‐specific fatigue management strategies. Furthermore, majority of these interventions are mainly individually delivered but some individuals with IA have reported the benefits of peer‐support in applying self‐management strategies (Carandang et al., 2022; O’Riordan et al., 2017). In response to preferences for group‐based interventions, a four‐week group‐based fatigue management programme, Fatigue and Activity Management Education for Work (FAME‐W), was developed.…”

Fatigue as an Understudied Barrier to Participation in Life Roles

“…Other interventions include Resilience-based, Energy Management to Enhance Wellbeing and Fatigue (RENEW) for systemic sclerosis; Reinvent, Integrate, Strengthen, Expand Self-Management Program (RISE) for cancer survivors (Goodfellow et al, 2021); and Reducing Arthritis Fatigue (RAFT) for arthritis (Hewlett et al, 2019). Others, such as Fatigue and Activity Management Education (FAME), were developed initially for one population (systemic lupus erythematosus; O’Riordan et al, 2017) and adapted for other groups such as systemic sclerosis (Carandang et al, 2022) and COVID. Although the evidence for occupational therapy’s role in fatigue management ranges in strength from moderate to strong, several limitations remain, and efforts must be made to advance this body of evidence.…”