Measuring Fatigue In Adolescents And Young Adults With Cerebral Palsy

Fatigue is a significant issue and has been estimated to affect between 30-50% of individuals with cerebral palsy (CP) in various studies; however, there is no validated measure of fatigue for this population. A systematic review revealed no one single measure with adequate psychometric properties for use with individuals with CP. As a result a new tool was created: the Fatigue Impact and Severity Self-Assessment (FISSA). Interviews were conducted with youth and young adults with CP to understand the bodily experience of living with CP and as a client-centered approach to item creation for the FISSA. Focus groups with healthcare professionals were used to reduce the number of items on the FISSA and to ensure relevance to the population. A large survey was conducted to assess the validity, reliability and factor structure of the FISSA. The bodily experience of CP revolved around, and emphasized, fatigue that occurs with walking and prolonged activity. Self-awareness of the individuals’ own bodies emerged as the most important theme and strategies employed to prevent and manage fatigue were elucidated. In the validation study, individuals who self-classified as level I on the Gross Motor Function Classification System (GMFCS) were shown to experienced less fatigue than individuals in any other GMFCS level (II-V) (p\u3c .001). Individuals with higher pain (both impact and severity) also reported higher fatigue scores (p\u3c .001). The FISSA was shown to be reliable (α = 0.95; ICC(3,1)=0.74 (95% CI 0.53-0.87)) and contains 31 items related to two factors (Impact of Fatigue and Management/Activity Modification) that together explain 48.7% of the variance in fatigue scores. The FISSA was created to examine the severity, impact and management of fatigue for youth and young adults with CP. The FISSA is reliable and was able to discriminate between groups expected to experience more fatigue including those with a more severe motor disability according to the GMFCS and individuals with a higher degree of pain. The FISSA allows for individualized identification of the activities of daily living that may be compromised by fatigue, which may enhance collaborative goal setting and intervention planning by clinicians and their clients