Background/Purpose: Fatigue is a multi-faceted symptom of rheumatic disease that has high priority among patients due to its far-reaching effects on roles and relationships. There is a paucity of resources around the impact of fatigue as experienced by young adults, who are often making decisions around career and family that lay the foundation for their adult lives. Therefore, the purpose of this study was to determine fatigue impact, gaps in young adult patients’ knowledge on fatigue, and preferences for format and content of future fatigue resources.

Methods: Questionnaires and semi-structured interviews were conducted with young adults (18-30 years old) recruited via social media, who self-reported rheumatic diagnoses and had combined fatigue scores of 12+ on the first 3 questions of the Multidimensional Assessment of Fatigue (MAF) Scale. Pregnant women were excluded. The full MAF, PedsQL Multidimensional Fatigue Scale, and Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) assessed fatigue impact and experiential components of physical, emotional, and cognitive fatigue. Interviews focused on perceptions of fatigue, strategies to manage fatigue, and preferences for educational resources. Quantitative data were analyzed descriptively; qualitative data were analyzed using constant comparative analysis.

Results: Participants were 10 women (27.0 ± 2.8 years old), had varying diagnoses (e.g. JIA, MCTD, SLE, PsA, Scleroderma), were a majority white (70%), and all employed (100%) with some part-time school enrollment (40%). Participants were significantly impacted by their fatigue, scoring one standard deviation from established patient norms on all surveys (MAF=38.1 ± 7.0; PedsQL= 40.1 ± 13.8; FACIT-F Emotional Well-Being= 14.4 ± 4.5). All participants reported the need for additional information about fatigue at diagnosis; participants were not prepared for the chronicity of fatigue and its effects on daily life. Current fatigue management strategies were developed through trial-and-error with limited support from healthcare teams. Participants felt professional recommendations were often non-specific to fatigue, too basic (e.g. take naps), or were un-relatable to their financial situations and high stress environments (e.g. school, work, motherhood). Participants desired more information about the epidemiology and physiology of fatigue and strategies specific to activities of young adults (e.g. having energy to socialize after work). While most participants agreed that information was more helpful from fellow patients rather than providers, there was discussion about how to combine both sets of expertise using innovative online tools.

Conclusion: Young adults reported that fatigue significantly impacted their participation in desired activities. As such, resources should be tailored to developmental concerns especially within contexts of early careers and family life. While non-pharmacological interventions are shown to be efficacious in reducing fatigue for persons with rheumatic disease, future research should assess the relevance of these interventions in addressing specific needs of the young adult population.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/determining-the-need-for-fatigue-management-resources-for-young-adults-with-rheumatic-disease/